apsfa's Diaryland Diary
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Antiphospholipid Syndrome (APS) Education
Michael D. Lockshin, MD
Attending Rheumatologist, Hospital for Special SurgeryProfessor of Medicine, Weill Cornell Medical CollegeDirector, Barbara Volcker Center for Women and Rheumatic Disease
In this presentation, Dr. Lockshin provides an explanation of antiphospholipid syndrome (APS) and how it can be treated. He then answers questions submitted by patients in attendance.
http://www.hss.edu/conditions_antiphospholipid-syndrome-education.asp
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS
9:06 PM - May 23, 2009
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Volume 13 of the APSFA Newsletter - \"Antiphospho...What?\" is NOW Available!
Hello!!
The SPRING/SUMMER 2009 volume of our quarterly newsletter, "Antiphospho...What??" is ready to be downloaded. You can download it at the following link: http://www.apsfa.org/docs/APSFAVol13SprSum2009.pdf
The next volume will be coming out in late Summer, early Fall, 2009.
Please let us know if there are any topics that you'd like our Medical Advisors to cover in their articles. We try to request topics that people are emailing about or that are discussed on our the forum. So if there's anything you'd like to see, please let us know and we'll pass it along to the medical advisors.
We are still in need of patient stories (esp about Pregnancy Loss, Men and Teens or Children), recipes, poems, related book reviews, and anything else you think would be of interest for upcoming newsletters. (book reviews, poems, recipes, articles written by family members, etc.) Please submit articles to the following email address: articles@apsfa.org.
If you have an idea and are not sure if it would fit, please feel free to contact us through our contact page on the website, or email us using the email address below. We are open to any suggestions. Without your help we would not be able to include an APS patient's story in each of our newsletters.
Thank you to those people who have submitted articles. If you have submitted an article and we have not used it yet, we will be using it in the near future.
We could also use articles written by medical professionals or medical students. Please contact us if you are interested.
Please remember to check our website for any changes at the following link: http://www.apsfa.org/new.htm
Thank you for your continued support!
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS
9:27 PM - May 21, 2009
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Antiphospholipid Antibody Syndrome (APS) Workshop
Who: Hospital for Special Surgery
What: Antiphospholipid Antibody Syndrome (APS) Workshop
Where: 535 East 70th Street, New York City
When: Thursday April 30, 2009 from 6:00PM - 8PM EST
Why: APS can affect any organ, potentially causing blood clots, strokes, miscarriages, or other symptoms. It can occur alone or may be associated with an immune disorder like lupus.
For More Information: Call 212-774-7326
To Register: Click here: http://wwww.hss.edu/pped
This one-session workshop provides an essential overview of diagnosis and treatment, and the opportunity to share your experiences with others coping with APS.
Speakers will be Michael Lockshin, MD and Jillian Rose, LMSW
The APS Foundation of America, Inc will have materials present.
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS
7:37 PM - April 15, 2009
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New Cafe Press Graphics & Gear - Check It Out!
We just added several new designs in our CafePress store. If there's a design you like and it's not on an item (like a button, hat, sticker...etc) please email Heidii at heidi@apsfa.org and she will add it. Our Cafe Press Store is located here: http://www.cafepress.com/apsfoundation
100% of the profits from these products will go to the APS Foundation of America, Inc. APS Stands for Antiphospholipid Antibody Syndrome, which is a blood disorder that causes blood clots, strokes in young people and multiple miscarriages in women. The APS Foundation of America, Inc. is dedicated to fostering and facilitating joint efforts in the areas of education, public awareness, research and patient services in an effective and ethical manner. Thanks for looking!
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS
6:00 PM - April 09, 2009
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March is Deep Vein Thrombosis (DVT) Awareness Month
Click on this banner to watch the video:
or you can watch this here: http://www.youtube.com/watch?v=RUYI6Xju4RA
For DVT related awareness gear go to http://www.cafepress.com/apsfoundation.
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS
7:04 PM - March 19, 2009
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Volume 12 of the APSFA Newsletter - \"Antiphospho...What?\" is NOW Available!
Hello!!
The WINTER/SPRING 2009 volume of our quarterly newsletter, "Antiphospho...What??" is ready to be downloaded. You can download it at the following link: http://www.apsfa.org/docs/APSFAVol12WinSpr2009.pdf
The next volume will be coming out in late Spring, early Summer, 2009.
Please let us know if there are any topics that you'd like our Medical Advisors to cover in their articles. We try to request topics that people are emailing about or that are discussed on our the forum. So if there's anything you'd like to see, please let us know and we'll pass it along to the medical advisors.
We are still in need of patient stories (esp about Pregnancy Loss, Men and Teens or Children), recipes, poems, related book reviews, and anything else you think would be of interest for upcoming newsletters. (book reviews, poems, recipes, articles written by family members, etc.) Please submit articles to the following email address: articles@apsfa.org.
If you have an idea and are not sure if it would fit, please feel free to contact us through our contact page on the website, or email us using the email address below. We are open to any suggestions. Without your help we would not be able to include an APS patient's story in each of our newsletters.
Thank you to those people who have submitted articles. If you have submitted an article and we have not used it yet, we will be using it in the near future.
We could also use articles written by medical professionals or medical students. Please contact us if you are interested.
Please remember to check our website for any changes at the following link: http://www.apsfa.org/new.htm
Thank you for your continued support!
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, newsletter
8:41 AM - March 02, 2009
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Volume 11 of the APSFA Newsletter - \"Antiphospho...What?\" is NOW Available!
The FALL/WINTER 2008 volume of our quarterly newsletter, "Antiphospho...What??" is ready to be downloaded. You can download it at the following link: http://www.apsfa.org/docs/APSFAVol11FallWin2008.pdf
The next volume will be coming out in late winter/early spring, 2009.Please let us know if there are any topics that you'd like our Medical Advisors to cover in their articles. We try to request topics that people are emailing about or that are discussed on our the forum. So if there's anything you'd like to see, please let us know and we'll pass it along to the medical advisors.
We are still in need of patient stories (esp about Pregnancy Loss, Men and Teens or Children), recipes, poems, related book reviews, and anything else you think would be of interest for upcoming newsletters. (book reviews, poems, recipes, articles written by family members, etc.) Please submit articles to the following email address: articles@apsfa.org.
If you have an idea and are not sure if it would fit, please feel free to contact us through our contact page on the website, or email us using the email address below. We are open to any suggestions. Without your help we would not be able to include an APS patient's story in each of our newsletters.
A patient story is as easy as writing your intro!
Thank you to those people who have submitted articles. If you have submitted an article and we have not used it yet, we will be using it in the near future.
We could also use articles written by medical professionals or medical students. Please contact us if you are interested.
Please remember to check our website for any changes at the following link: http://www.apsfa.org/new.htm
Thank you for your continued support!
Keyword: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, newsletter
10:08 AM - December 03, 2008
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2008 APSFA Giving Tree
Welcome to our 3rd annual Holiday Giving Tree. This tree holds a special meaning for the members of the APS Foundation of America, Inc and the community it serves.
In the past two years over $3000 were donated to the APS Foundation of America, Inc. during the holiday season.
Each ornament and present signifies a donation made to the APSFA in the name of an individual or group honored at this special time of the year. This donation will enable us to keep our unique non-profit organization operating and help promote awareness of APS.
All donations made by 12/31/08 towards the Giving Tree are tax deductible.
To make a donation and add an ornament to our tree click here: http://www.apsfa.org/givingtree.htm
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, holiday, fundraiser
1:07 PM - November 23, 2008
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*Exclusive* 2008 APSFA Holiday Ornament
This is an EXCLUSIVE holiday ornament for 2008. This design will not be available after December 31, 2008 so get it while you can! Each ornament bought will donate $2.00 to the APSFA.
$7.99
http://www.cafepress.com/apsfoundation/1952386
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, holiday, fundraiser
1:07 PM - November 23, 2008
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Antiphospholipid Antibody Syndrome (APS) Focus Interview
You read about it in the newsletter and we did get in on the net in full!! Enjoy!
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS
3:03 PM - October 12, 2008
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Volume 10 of the APSFA Newsletter - \"Antiphospho...What?\" is NOW Available!
The SUMMER/FALL 2008 volume of our quarterly newsletter, "Antiphospho...What??" is ready to be downloaded. You can download it at the following link: http://www.apsfa.org/docs/APSFAVol10SumFall2008.pdf
The next volume will be coming out in November/December, 2008.
Please let us know if there are any topics that you'd like our Medical Advisors to cover in their articles. We try to request topics that people are emailing about or that are discussed on our support forum. (http://www.apsforum.com) So if there's anything you'd like to see, please let us know and we'll pass it along to the medical advisors.
We are still in need of patient stories (esp about Pregnancy Loss, Men and Teens or Children), recipes, poems, related book reviews, and anything else you think would be of interest for upcoming newsletters. (book reviews, poems, recipes, articles written by family members, etc.) Please submit articles to the following email address: articles@apsfa.org. If you have an idea and are not sure if it would fit, please feel free to contact us through our contact page on the website, or email us using the email address below. We are open to any suggestions. Without your help we would not be able to include an APS patient's story in each of our newsletters.
Thank you to those people who have submitted articles. If you have submitted an article and we have not used it yet, we will be using it in the near future.
Please remember to check our website for any changes at the following link: http://www.apsfa.org/new.htm
Thank you for your continued support!
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, newsletter
7:20 PM - September 29, 2008
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Volume 9 of the APSFA Newsletter - \"Antiphospho...What?\" is NOW Available!
Hello!!
The SPRING/SUMMER 2008 volume of our quarterly newsletter, "Antiphospho...What??" is ready to be downloaded. You can download it at the following link: http://www.apsfa.org/docs/APSFAVol9SprSum2008.pdf
The next volume will be coming out in August/September, 2008.
Please let us know if there are any topics that you'd like our Medical Advisors to cover in their articles. We try to request topics that people are emailing about or that are discussed on our support forum. (http://www.apsforum.com)
So if there's anything you'd like to see, please let us know and we'll pass it along to the medical advisors. We are still in need of patient stories (esp about Pregnancy Loss, Men and Teens or Children), recipes, poems, related book reviews, and anything else you think would be of interest for upcoming newsletters. (book reviews, poems, recipes, articles written by family members, etc.) Please submit articles to the following email address: articles@apsfa.org.
If you have an idea and are not sure if it would fit, please feel free to contact us through our contact page on the website, or email us using the email address below. We are open to any suggestions. Without your help we would not be able to include an APS patient's story in each of our newsletters. Thank you to those people who have submitted articles.
If you have submitted an article and we have not used it yet, we will be using it in the near future.
Please remember to check our website for any changes at the following link: http://www.apsfa.org/new.htm
Thank you for your continued support!
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, newsletter
9:11 AM - June 04, 2008
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JUNE IS APS AWARENESS MONTH: GET IN THE FLOW!
FOR IMMEDIATE RELEASE
Date: 06/02/2008
Contact: Christina "Tina" Pohlman
Phone: 608-782-2626
Website Address: www.apsfa.org
Email Address: apsfa@apsfa.org
JUNE IS APS AWARENESS MONTH: GET IN THE FLOW!
The APS Foundation of America, Inc. (APSFA) has declared June as National Antiphospholipid Antibody (APS) Awareness Month. We are educating the public and medical community about this disorder, urging people to Get in the Flow!
This disorder threatens to become more common than Lupus and Multiple Sclerosis.
The APSFA is sending petitions to several states to make June APS Awareness Month. The APSFA will be attending conferences, medical seminars, grand rounds and health fairs to share the patient perspective and provide awareness of APS throughout the month of June and also encouraging the community to Get in the Flow. Individual and APSFA fundraisers will be occurring throughout the country to help promote APS awareness and help support the mission.
Knowing more about APS can make all the difference. Get in the know and Get in the Flow!
The APSFA is the only
For more information Contact: Christina "Tina" Pohlman at Phone: 608-782-2626
Website Address: www.apsfa.org. Email Address: apsfa@apsfa.org
###
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS
10:54 AM - June 01, 2008
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June is APS Awareness Month PSA
URL: http://www.youtube.com/watch?v=7ZLUij1O-MQ
June is Antiphospholipid Antibody Syndrome (APS) Awareness month.
APS is associated with recurrent clotting events (thrombosis) including premature stroke, repeated miscarriages, phlebitis, venous thrombosis (clot in the vein) and pulmonary thromboembolism (blockage of an artery found in the lung due to a clot that has traveled from a vein). It is also associated with low platelet or blood elements that prevent bleeding. Recently, however, even more disease states have been linked with APL including premature heart attack, migraine headaches, various cardiac valvular abnormalities, skin lesions, abnormal movement/chorea, diseases that mimic multiple sclerosis, vascular diseases of the eye that can lead to visual loss and blindness.
The APS Foundation of America, Inc. is the only United States nonprofit health agency dedicated to bringing national awareness to Antiphospholipid Antibody Syndrome (APS), the major cause of multiple miscarriages, thrombosis, young strokes and heart attacks. We are a volunteer run, community based 501(c)3 non-profit Public Charity organization and is dedicated to fostering and facilitating joint efforts in the areas of education, support, public awareness, research and patient services. Our URL is http://www.apsfa.org
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, PSA
9:19 AM - May 02, 2008
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APS Awareness PSA
URL: http://www.youtube.com/watch?v=_Ib_0Gk94XI
APS is associated with recurrent clotting events (thrombosis) including premature stroke, repeated miscarriages, phlebitis, venous thrombosis (clot in the vein) and pulmonary thromboembolism (blockage of an artery found in the lung due to a clot that has traveled from a vein). It is also associated with low platelet or blood elements that prevent bleeding. Recently, however, even more disease states have been linked with APL including premature heart attack, migraine headaches, various cardiac valvular abnormalities, skin lesions, abnormal movement/chorea, diseases that mimic multiple sclerosis, vascular diseases of the eye that can lead to visual loss and blindness.
The APS Foundation of America, Inc. is the only United States nonprofit health agency dedicated to bringing national awareness to Antiphospholipid Antibody Syndrome (APS), the major cause of multiple miscarriages, thrombosis, young strokes and heart attacks. We are a volunteer run, community based 501(c)3 non-profit Public Charity organization and is dedicated to fostering and facilitating joint efforts in the areas of education, support, public awareness, research and patient services. Our URL is http://www.apsfa.org
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, PSA
9:19 AM - May 02, 2008
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Volume 8 of Our Newsletter, \"Antiphospho...What?\" is available for download!
Volume 8 of Our Newsletter, "Antiphospho...What?" is available for download!
The newest installment of our quarterly newsletter, "Antiphospho...What??" is available for download at this link: http://www.apsfa.org/docs/APSFAVol8WinSpr2008.pdf
The next volume will be coming out in May, 2008.
Thank you to those people who submitted articles. If you have submitted an article and we have not used it yet, we will be using it in the near future.
We are in need of patient stories (esp about Men and Teens or Children), recipes, poems, related book reviews, and anything else you think would be of interest for upcoming newsletters. Please submit articles to the following email address: articles@apsfa.org.
If you have an idea and are not sure if it would fit, please feel free to contact us through our contact page on the website, or email us using the email add or email us using the email address below. We are open to any suggestions.
Please remember to check our website for any changes at the following link: http://www.apsfa.org/new.htm
Thank you for your continued support.
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS
1:23 PM - March 23, 2008
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Deep-Vein Thrombosis (DVT) Awareness Program
Deep-Vein Thrombosis (DVT) Awareness Program
Featuring: Melanie Bloom, National Patient Spokesperson, Coalition to Prevent DVT
Date & Time: March 11, 2008, 2:00-3:00PM
Location: University of Utah School of Medicine, Salt Lake City, UT
Sponsored by: University of Utah Thrombosis Service & University of Utah 5 Med Nursing Staff
If you have any questions, please call 801-581-7818.
Click here to download a flier with more information about this DVT Awareness Month event.
http://www.clotcare.com/clotcare/dvt_awareness_month_march_2008.aspx#dvtawarenessunivutah
5:08 PM - March 01, 2008
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Blood Clots and Blood Clotting Disorders: Key Issues in Diagnosis, Treatment and Prevention
Blood Clots and Blood Clotting Disorders:
Key Issues in Diagnosis, Treatment and Prevention
Saturday, March 1, 2008
Education and Discussion Seminar on Blood Clots
Patients, Family Members, Public and Health Care Providers are welcome
This seminar is FREE but registration before February 22nd is requested.
Hosted by
The University of North Carolina Thrombosis Program in conjunction with the National Alliance for Thrombosis and Thrombophilia and Duke University Thrombosis & Hemostasis Center
Location
Hilton Hotel
Raleigh-Durham Airport at Research Triangle Park
4810 Page Creek Lane, Durham, NC
(919) 941-6000
Agenda
Click here to download the complete program. http://www.nattinfo.org/NATT_Stop_The_Clot_March_2008.pdf
Registration Information:
This seminar is FREE but registration before February 22nd is requested as space is limited. Registration includes breakfast, lunch and materials.
To register, please log on to http://unchealthcare.org/bloodclotseminar. For questions, call Cheryl Jeanneret at 919-843-2568 or e-mail: cheryl_jeanneret@med.unc.edu.
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS
12:11 PM - February 24, 2008
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GoodSearch.com Charity of the Day 2/28/08!
The APS Foundation of America, Inc will be featured as the Charity of the Day on GoodSearch.com on February 28, 2008!!
Please remember to use GoodSearch.com, the Yahoo-powered search engine, for all of your web searches as we receive a penny every time you do a search!!
And, please do all of your online shopping through GoodShop.com, the online shopping mall which donates a percentage of each purchase to us! Hundreds of great stores including Target, Gap, Best Buy, Barnes & Noble, Macy’s and ebay have teamed up with GoodShop and every time you place an order, you’ll be supporting us!
You can use GoodSearch and GoodShop every day, but be sure to check us out on the GoodSearch homepage on February 28, 2008!!
2:11 PM - February 18, 2008
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New APSFA Cafe Press Coupon!
Here is a Cafe Press Coupon to help with your order:
100% of the profits from these products will go to the APS Foundation of America, Inc.
To visit our Cafe Press Store click here: NAME="http://www.cafepress.com/apsfoundation">http://www.cafepress.com/apsfoundation
Brought to you by the APS Foundation of America
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS
10:45 AM - February 17, 2008
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Giving Tree 2007 - Thank You!
This tree holds a special meaning for the members of the APS Foundation of America, Inc and the community it serves. And since the Giving Tree was such a big success, we will be making this an annual tradition.
CLICK HERE to see our 2007 Giving Tree: http://www.apsfa.org/givingtree.htm
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS
2:09 PM - January 07, 2008
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What's New On MissionFish This Week?
There are items on MissionFish right now some of you may be interested in purchasing. Direct link: http://www.missionfish.org/NPMMF/nphomepage.jsp?NP_ID=14582
Original 16x20 Oil PAINTing Winter Landscape snow tree
slim80craft2
Starting Bid: $18.99
15% donated to the APSFA
3d 7h 51m time left to bid as of this post
Original 8x10 Acrylic Painting Landscape COA blue green
slim80craft2
Starting Bid: $9.99
10% donated to the APSFA
3d 8h 23m time left to bid as of this post
Original Small Acrylic Painting Chickadee Bird coa
slim80craft2
Starting Bid: $8.99
10% donated to the APSFA
3d 8h 48m time left to bid as of this post
Original Small Acrylic Painting winter snow landscape
slim80craft2
Starting Bid: $8.99
10% donated to the APSFA
3d 8h 55m time left to bid as of this post
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS
2:24 PM - January 03, 2008
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APS FOUNDATION OF AMERICA, INC. JOINS WITH NORD TO CELEBRATE THE 25th ANNIVERSARY OF THE ORPHAN DRUG ACT
FOR IMMEDIATE RELEASE
Date: 12/19/2007
Contact: Christina "Tina" Pohlman
Phone: 608-782-2626
Website Address: www.apsfa.org
Email Address: apsfa@apsfa.org
APS FOUNDATION OF AMERICA, INC. JOINS WITH NORD TO CELEBRATE THE 25th ANNIVERSARY OF THE ORPHAN DRUG ACT
La Crosse, WI, January 3, 2008----On January 4, 1983, President Ronald Reagan signed groundbreaking legislation that brought real hope for more than 25 million Americans living with one of the 7,000 rare disorders recognized today. The Orphan Drug Act of 1983 (ODA) spurred breakthrough drug research and development for little-known diseases, while providing a potent catalyst to the growth of the pharmaceutical and biotechnology industries in the U.S.
An “orphan” disease is defined by the U.S. Food and Drug Administration (FDA) as a disease or condition that affects fewer than 200,000 Americans. In the past, because of very low prevalence, orphan diseases were overlooked by drug and medical device developers. In the 10 years prior to passage of the ODA, only 10 new drugs for rare diseases were developed by the pharmaceutical industry. In the 25 years since the approval of the ODA, more than 300 new orphan drugs have been approved in the U.S.—an average of about 11 new drugs every year.
The APS Foundation of America, Inc. is just one organization that acts on behalf of patients and their healthcare professionals to promote improvements in diagnosis and treatment for a rare disease—Antiphospholipid Antibody Syndrome (APS). APS affects new patients every year. Women are more likely than men to be affected by APS. Some estimates say that 75% to 90% of those affected are women. For example, it has been estimated by some doctors that one third of all of young strokes (defined as under the age of 50) are due to APS.
In obstetrics it is estimated by some doctors that up to 25% of all women with 2 or more spontaneous miscarriages have APS. Some doctors believe that 1 in 5 of all Deep Vein Thrombosis (DVTs), Pulmonary Embolisms (PEs), and even worse, amputations are due to APS. And it is believed that 40-50% of patients with Lupus also have APS. Still, with these statistics, APS rarely is discussed as a women’s health issue and is misdiagnosed often. Therefore the total number of people affected and true statistics are unknown really.
APS is an autoimmune disorder in which the body recognizes certain normal components of blood and/or cell membranes as foreign substances and produces antibodies against them. There are two known forms of APS. APS may occur in people with systemic lupus erythematosus, other autoimmune disease, or in otherwise healthy individuals. Sadly, when most people hear about APS and it being referred to as autoimmune disease, they incorrectly confuse the terms autoimmune with acquired immune deficiency syndrome (AIDS); or they think this is a form of cancer.
This lack of knowledge and awareness results in needless suffering for persons with APS. Misdiagnosis and / or delayed diagnosis usually result in damage to vital organs. The need to bring a national attention to APS as a common factor in multiple miscarriages, thrombosis, young strokes and heart attacks is vital in order to bring a joint effort to research, funding, early detection, and eventually, prevention and cure for APS.
There is no cure for APS, but there is treatment. The treatment of choice for patients with APS who have had a blood clot is anticoagulant therapy. Please note there is no FDA approved treatment to control these antibodies that we for that cause these problems. This is usually successful in preventing further clots. For women with APS and recurrent miscarriages who have not had a prior blood clot, the use of anticoagulant therapy during the pregnancy significantly increases the likelihood of a successful outcome. Some individuals may have elevated antiphospholipid antibodies but have no clinical manifestations of the syndrome. These individuals are usually treated with aspirin. Aspirin reduces the risk of blood clots by making the platelets less sticky. Studies are ongoing to determine how helpful aspirin is and whether low doses of anticoagulants might be more effective.
In general patients who have had a blood clot (i.e., stroke, heart attack, DVT) and have persistently positive tests for antiphospholipid antibodies should be treated with anticoagulants indefinitely. Discontinuing treatment after a fixed period of time, such as six months, may be quite dangerous in such patients. In some patients with a history of blood clots, antiphospholipid antibodies may disappear after a certain period of time. It is not known whether it is safe to stop anticoagulation in this situation. Consultation with a doctor experienced in treating APS is recommended for such patients.
On the 25th anniversary of the signing of the Orphan Drug Act, we join with the National Organization for Rare Disorders (NORD) and its members in continuing our commitment to, and support for, patients around the world with rare diseases. We also celebrate the success of this legislation in bringing improvements in healthcare to millions of Americans. Through drugs as diverse as Thalomid® (thalidomide), Myozyme® (alglucosidase alfa), Nutropin® (somatropin {rDNA origin} for injection), and Gleevec® (imatinib), the ODA has offered new opportunities for patients that might never otherwise have existed.
NORD was founded in 1983 to help people with rare “orphan” diseases and to assist the organizations that serve them. The founders of NORD were a driving force behind the passage of the ODA. This is an appropriate time to congratulate them on their vision and recognize them for their persistence and their success.
We also recognize that the achievements of companies like Genentech, Amgen, Genzyme, Allergan, Cephalon, Celgene and others have been profoundly influenced by the existence of the ODA, which has brought jobs for thousands in the biotech and pharmaceutical industries, financial rewards for many of the early investors in such companies, and diverted the focus of scientific inquiry to chronic and life-threatening diseases that were previously untreated, leaving patients hopeless, until the ODA was enacted.
With the current advances in such areas as genomics, proteomics, targeted therapeutics, personalized medicine, and stem cell biology, we can expect to see a vast array of new breakthrough products developed for rare disorders in the next 25 years—and we need to make sure that such products will be available and accessible for the patients with these disorders who so badly need them.
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Media contacts:
Christina "Tina" Pohlman President, 608-782-2626, www.apsfa.org, apsfa@apsfa.org
Mary Dunkle, National Organization for Rare Disorders, (203) 744-0100, mdunkle@rarediseases.org
Peggy Heller, Vox Medica, Inc., (908) 918 0092, pheller@voxmedica.com
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS
3:01 PM - December 19, 2007
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New On MissionFish This Week
There are items on MissionFish right now some of you may be interested in purchasing.
Direct link: http://www.missionfish.org/NPMMF/nphomepage.jsp?NP_ID=14582
8x10 AcrYLic PAINTing whimsical SnowMan Christmas tree
slim80craft2
Starting Bid: $12.99
15% donated to the APSFA
16h 29m time left to bid as of this post
8x10 Oil Painting Country Cow Chicken Farm Xmas
slim80craft2
Starting BidL $12.99
10% donated to the APSFA
2d 15h 21m time left to bid as of this post
12x16 AcrYLic PAINTing of a single yellow rose
slim80craft2
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15% donated to the APSFA
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12x16 OIL PAINTing of a colorful Winter Landscape
slim80craft2
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8x10 Acrylic Painting Landscape Water Bridge Xmas
slim80craft2
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10% donated to the APSFA
6d 16h 47m time left to bid as of this post
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS
10:30 AM - December 11, 2007
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Last Minute Shopping? Need Ideas?
Here is a Cafe Press Coupon to help with your order:
100% of the profits from these products will go to the APS Foundation of America, Inc.
To visit our Cafe Press Store click here: http://www.cafepress.com/apsfoundation
Brought to you by the APS Foundation of America
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS
7:22 PM - December 10, 2007
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2007 APSFA Giving Tree!
2007 APSFA Giving Tree!
Last year's Giving Tree was such a success that we've brought it back just in time for the holidays! The holiday Giving Tree at the APS Foundation of America, Inc holds a special meaning for the members of the APSFA and the community it serves.
Each ornament and present signifies a donation made to the APSFA in the name of an individual or group honored at this special time of the year. You can pick out your special ornament below and for a donation we will put your ornament on our Giving Tree. We hope that by the new year, our Giving Tree will be fully decorated!
Your donation will enable the APSFA to keep our unique non-profit organization operating and help promote awareness of Antiphospholipid Antibody Syndrome and as always, your donation is tax deductible.
Any donations made in memory or in honor of a loved one will have a special ornament and package so they stand out from the rest. All donor names will be listed under the tree as the ornament donations come in.
To make a donation and add an ornament to our tree click here: http://www.apsfa.org/givingtree.htm
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS
11:10 AM - December 09, 2007
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*Exclusive* 2007 APSFA Holiday Ornament
*Exclusive* 2007 APSFA Holiday Ornament
The ornaments are $7.99 each with $2.00 of that going right back to the APSFA.
Click HERE to purchase our Exclusive 2007 Holiday Snowflake Ornament: http://www.cafepress.com/apsfoundation
Brought to you by the APS Foundation of America
Here is a Cafe Press Coupon to help with your order:
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS
12:52 PM - December 08, 2007
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This Weekend on MissionFish
There are items on MissionFish right now some of you may be interested in purchasing.
Direct link: http://www.missionfish.org/NPMMF/nphomepage.jsp?NP_ID=14582
8x10 AcrYLic PAINTing of 3 Pears by Savage
slim80craft2
Starting Bid: $12.99
15% donated to the APSFA
2d 12h 37m left to bid as of this post
8x10 AcrYLic PAINTing whimsical SnowMan Christmas tree
slim80craft2
Starting Bid: $12.99
15% donated to the APSFA
4d 14h 21m left to bid as of this post
8x10 Oil Painting Country Cow Chicken Farm Xmas
slim80craft2
Starting Bid: $12.99
10% donated to the APSFA
6d 13h as of this post
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS
11:46 AM - December 07, 2007
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This was just added to MissionFish.
There are items on MissionFish right now some of you may be interested in purchasing. Direct link: http://www.missionfish.org/NPMMF/nphomepage.jsp?NP_ID=14582
8x10 AcrYLic PAINTing of 3 Pears by Savage
slim80craft2
Starting Bid: $12.99
15% donated to the APSFA
5d 10h 56m left to bid as of this post.
1:12 PM - December 04, 2007
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What's New On MissionFish This Week?
There are items on MissionFish right now some of you may be interested in purchasing.
Direct link: http://www.missionfish.org/NPMMF/nphomepage.jsp?NP_ID=14582
AcrYLic PAINTing by Savage STuffed ANImal FRiends Xmas
slim80craft2
Starting Bid: $17.99
15% donation to the APSFA
6d 15h 35m left to bid as of this post
AcRyLIc PAINTing BluE PinK LavendeR Landscape Xmas
slim80craft2
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10% donation to the APSFA
6d 15h 53m left to bid as of this post
AcRyLiC PaINTinG Savage ReD GOld SuNSet Landscape Xmas
slim80craft2
Starting Bid: $17.99
10% donation to the APSFA
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Acrylic Painting Landscape Water Bridge trees - Xmas
slim80craft2
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Nativity Hallmark Keepsake Ornament 1996 xmas MIB
slim80craft2
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15% donation to the APSFA
6d 16h 40m left to bid as of this post
8:54 AM - November 30, 2007
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Volume 7 of Our Newsletter, \"Antiphospho...What?\" is available for download!
Volume 7 of Our Newsletter, "Antiphospho...What?" is available for download!
The newest installment of our quarterly newsletter, "Antiphospho...What??" is available for download at this link: http://www.apsfa.org/docs/APSFAVol7Fall2007.pdf
The next volume will be coming out in February, 2008.
Thank you to those people who submitted articles. If you have submitted an article and we have not used it yet, we will be using it in the near future.
We are in need of patient stories (esp about Men and Teens or Children), recipes, poems, related book reviews, and anything else you think would be of interest for upcoming newsletters. Please submit articles to the following email address: articles@apsfa.org. If you have an idea and are not sure if it would fit, please feel free to contact us through our contact page on the website, or email us using the email add or email us using the email address below. We are open to any suggestions.
Please remember to check our website for any changes at the following link: http://www.apsfa.org/new.htm
Thank you for your continued support.
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS
2:14 PM - November 25, 2007
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2007 APSFA Giving Tree!
Last year's Giving Tree was such a success that we've brought it back just in time for the holidays! The holiday Giving Tree at the APS Foundation of America, Inc holds a special meaning for the members of the APSFA and the community it serves.
Each ornament and present signifies a donation made to the APSFA in the name of an individual or group honored at this special time of the year. You can pick out your special ornament below and for a donation we will put your ornament on our Giving Tree. We hope that by the new year, our Giving Tree will be fully decorated!
Your donation will enable the APSFA to keep our unique non-profit organization operating and help promote awareness of Antiphospholipid Antibody Syndrome and as always, your donation is tax deductible.
Any donations made in memory or in honor of a loved one will have a special ornament and package so they stand out from the rest. All donor names will be listed under the tree as the ornament donations come in.
To make a donation and add an ornament to our tree click here: http://www.apsfa.org/givingtree.htm
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS
12:45 PM - November 25, 2007
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What's New On MissionFish This Week?
There are items on MissionFish right now some of you may be interested in purchasing. Direct link: http://www.missionfish.org/NPMMF/nphomepage.jsp?NP_ID=14582
Nativity Hallmark Keepsake Ornament 1996 xmas MIB
slim80craft2
Starting Bid $9.99
15% donated to the APSFA
2d 3h 38m left to bid
Original Acrylic Painting gift Savage Red Gold Sunset
slim80craft2
Starting Bid $24.99
10% donated to the APSFA
3d 7h 57m left to bid
Original Acrylic Painting gift Savage blue pink violet
slim80craft2
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Original Oil Painting gift Savage cow chicken green
slim80craft2
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Original Acrylic Painting gift Savage stuffed animals
slim80craft2
Starting Bid $24.99
15% donated to the APSFA
3d 12h 38m left to bid
12:13 PM - November 25, 2007
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*Exclusive* 2007 APSFA Holiday Ornament
*Exclusive* 2007 APSFA Holiday Ornament
The ornaments are $7.99 each with $2.00 of that going right back to the APSFA.
Click HERE to purchase our Exclusive 2007 Holiday Snowflake Ornament: http://www.cafepress.com/apsfoundation
Brought to you by the APS Foundation of America
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS
10:19 AM - November 20, 2007
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Friends & Family of APS Foundation of America, Inc. E-Store
Friends & Family of APS Foundation of America, Inc. E-Store
Get $15 off $50*
Offer Valid November 20-27, 2007
Start shopping at APS Foundation of America, Inc. E-Store: http://www.cafepress.com/apsfoundation
* Excludes Gift Certificates, bulk orders, taxes and shipping fees. Cannot be combined with any other offers, discounts or coupons. Valid through November 27, 2007 at 11:59 p.m. (PST).
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS
10:10 AM - November 20, 2007
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CellCept: New Black Box Warning Regarding Pregnancy
CellCept: New Black Box Warning Regarding Pregnancy
CellCept (mycophenolate mofetil)
Audience: Cardiac, renal, hepatic transplantation specialists, gynecologists, obstetricians, and other healthcare professionals
[Posted 10/29/2007] Roche and FDA notified healthcare providers that use of CellCept (mycophenolate mofetil) is associated with increased risk of first trimester pregnancy loss and increased risk of congenital malformations, especially external ear and facial abnormalities including cleft lip and palate, and anomalies of the distal limbs, heart, esophagus, and kidney. Based on postmarketing data from the United States National Transplantation Pregnancy Registry and additional postmarketing data collected in women exposed to systemic mycophenolate mofetil during pregnancy, the pregnancy category for CellCept has been changed from Category C (risk of fetal harm cannot be ruled out) to Category D (positive evidence of fetal risk). Labeling changes include the following sections: BOXED WARNING, WARNINGS/Pregnancy and Pregnancy Exposure Prevention, PRECAUTIONS/Information for Patients, and ADVERSE REACTIONS/Postmarketing Experience.
Within one week of beginning CellCept therapy, women of childbearing potential should have a negative serum or urine pregnancy test. In addition, women of childbearing potential (including pubertal girls and peri-menopausal woman) taking CellCept must receive contraceptive counseling and use effective contraception. Healthcare professionals and patients should be aware that CellCept reduces blood levels of the hormones in the oral contraceptive pill and could theoretically reduce its effectiveness. See the Dear Healthcare Professional Letter for additional recommendations for women of childbearing potential.
http://www.rocheusa.com/products/cellcept/pregnancy_notice.pdf
http://www.fda.gov/medwatch/safety/2007/safety07.htm
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, cellcept, pregnancy, warning
1:39 PM - October 30, 2007
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Blood Clots and Blood Clotting Disorders: Key Issues in Diagnosis, Treatment and Prevention
Blood Clots and Blood Clotting Disorders:
Key Issues in Diagnosis, Treatment and Prevention
Saturday, November 10, 2007
This FREE seminar will be of interest to:
* People who have had a blood clot or are at risk
* People with inherited clotting abnormalities
* Family members
* Health care workers
* Anyone wanting to know more about blood clots and wishing to advance prevention, diagnosis and treatment of thrombosis and thrombophilia
Hosted by
The National Alliance for Thrombosis and Thrombophilia in conjunction with the University of Utah and Intermountain Healthcare
Location
University of Utah's Health Sciences Education Building (HSEB) in Alumni Hall room 2110, Salt Lake City, UT
A map of the conference facilities can be found at http://www.conferences.utah.edu/images/pdf/UGHMap.pdf.
Agenda
Click here to download the complete program.
Registration Information
Registration before November 2nd is requested. You may register by sending an e-mail to: nattseminars@yahoo.com or you may RSVP by phone. Please call Kandace Kaylor at 801-408-1682 before November 4th and 801-507-3747 after November 4th. To register.
http://www.nattinfo.org/commandevents.htm#saltlake
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, NATT
7:55 PM - October 13, 2007
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APS Related Pregnancy Losses Study
My name is Susan Mathew and I am a doctoral nursing student at Texas Woman’s University, Houston, Texas, U. S. My topic of research is women’s experience of APS related pregnancy losses. You are invited to participate in the Antiphospholipid syndrome (APS) related perinatal loss dissertation study. If you are 18 years or above, can read, write, and understand English, and can spare a total of four hours to complete the interview process, which will be done in multiple e-mails and a follow-up phone call, you may participate in the study. However, in order to be eligible to participate you must have had a diagnosis of APS and one or more related pregnancy loss. You may e-mail me with your physical address so that an informed consent can be sent for you to read, understand, sign, and send it back to me in the self-addressed, stamped envelope I will enclose with the consent form. I will be sending a demographic data sheet also for you to complete.
Your participation in the study is completely voluntary and you can withdraw from the study without penalty if you wish to do so. Upon completion of the study, you will receive a summary of the findings of the study, if you like. You are assured that any information you will provide will be kept confidential and your identity will not be revealed as the email responses or the data will be assigned code numbers, not actual names. If interested, please email me at susanthushara@aol.com
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS
6:56 PM - September 26, 2007
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October is Lupus Awareness Month - Get Your Gear NOW!
And Remember that October is Lupus Awareness Month.
To visit our Cafe Press Store click here:http://www.cafepress.com/apsfoundation
Brought to you by the APS Foundation of America
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS
12:16 PM - September 18, 2007
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Volume 6 of out Newsletter, \"Antiphospho...What?\" is available for download!
The newest installment of our quarterly newsletter, "Antiphospho...What??" is available for download at this link: http://www.apsfa.org/docs/APSFAVol6Summer2007.pdf
The next volume will be coming out in November, 2007.
Thank you to those people who submitted articles. If you have submitted an article and we have not used it yet, we will be using it in the near future.
We are in need of patient stories (esp about Men and Teens or Children), recipes, poems, related book reviews, and anything else you think would be of interest for upcoming newsletters. Please submit articles to the following email address: articles@apsfa.org. If you have an idea and are not sure if it would fit, please feel free to contact us through our contact page on the website, or email us using the email add or email us using the email address below.
We are open to any suggestions.
Please remember to check our website for any changes at the following link: http://www.apsfa.org/new.htm
Thank you for your continued support.
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS
10:04 PM - September 01, 2007
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*Notice Regarding Mailing List*
Greetings from the APS Foundation of America, Inc.
Our server has recently made some changes and we now have to offer an opt in option for mass emails. Because of the server change, joining our mailing list
by clicking here: http://www.apsfa.org/index.html#list and filling out the form will now be the *ONLY* way you will
be able to receive our quarterly newsletter, "Antiphospho...What?" and APSFA announcements in your email inbox.
Please note: You will need to click the confirmation email to verify this subscription so please watch your spam buckets and remember to at @apsfa.org to
your safe list.
Thank you for your cooperation and we are sorry about the inconvenience.
APS Foundation of America, Inc. Staff
http://www.apsfa.org
Email us at: APSFA
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS
8:35 PM - September 01, 2007
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Got Gear?
100% of the profits from these products will go to the APS Foundation of America, Inc.
To visit our Cafe Press Store click here: http://www.cafepress.com/apsfoundation
Brought to you by the APS Foundation of America
Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS
8:21 PM - August 27, 2007
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Sisters' ailment identified
07/23/2007
Sisters' ailment identified
By Christy Murdoch , For the Herald-Standard
Sisters Darla Pardo and Robin L. Gibson display a variety of medications. After suffering symptoms for years, the two have been diagnosed with the blood-clotting disorder Antiphospholipid Antibody Syndrome.
After years of suffering from mysterious health problems, Robin L. Gibson and her sister, Darla Pardo, both of Fairchance, were finally diagnosed with Antiphospholipid Antibody Syndrome (APS), a serious blood-clotting disorder that can have devastating consequences.
Because of their struggle with the disease and their difficulty receiving a diagnosis, the sisters agreed to tell their story to educate the public and the medical community about APS. Their goal is simply to prevent others from suffering the way they have.
Gibson explained that APS is a blood-clotting disorder that causes the blood to be thicker than normal.
The main feature of the disorder is the development of blood clots that can occur at any time and can be fatal. She said it has been referred to as "sticky blood" syndrome.
"My sister and I have suffered for years with the disorder, but the doctors couldn't find a reason," Gibson said. "Some suggested that our problems were because of lifestyle. Others thought we suffered from anxiety and depression and prescribed antidepressants."
Gibson's clots are in the arteries, and Pardo's are in the veins.
"My doctor says I am a ticking time-bomb," Gibson said.
When the clots are in the arteries, Gibson said the consequences can be more immediate because the arteries carry blood to the major organs, such as the heart, lungs and brain. However, either condition is dangerous and serious.
Gibson, who is now 45, said her symptoms started when she was in her early 30s. She suffered headaches, left-sided numbness and occasional vision loss. She was initially diagnosed with migraine headaches.
When similar symptoms continued, Gibson was then diagnosed with transient ischemia attacks (TIAs), which in laymen terms are known as mini-strokes.
Although it was odd for a young person to suffer from TIAs, Gibson said the doctors were perplexed, but they weren't aware that there could be an underlying cause.
Eventually, Gibson suffered three strokes, leaving her with permanent body weakness, vision loss and impaired cognitive problems, such as some memory loss and confusion.
Gibson was diagnosed about 18 months ago. Her diagnosis prompted further investigation into Pardo's condition.
Both sisters now receive the appropriate treatment for APS, which is anticoagulant therapy (blood thinners), such as Coumidin or Lovenox.
Some people who test positive for elevated antibodies, but have no clinical signs or symptoms, may be treated with aspirin, making the formation of clots less likely.
Gibson said she is happy to finally have a diagnosis and to be receiving proper treatment.
"Having APS has been life-changing," Gibson said. "I was very active. It has robbed me of so many things I love to do.
"It is my hope that APS becomes more known, so others receive an early diagnosis and do not lose quality of life at a young age," she added.
It is believed that 1 to 5 percent of the population has APS, and it is a major women's health issue, according to the APS Foundation of America Inc. Web site. About 75 to 90 percent of those affected are women.
Gibson and Pardo were told that their children should be tested for the condition.
The Web site described APS as an autoimmune disorder like lupus and multiple sclerosis. APS may even coincide with those types of autoimmune conditions. The disorder is not well recognized, even within the medical community.
According to the Web site, the features of the syndrome are the development of conditions such as stroke, heart attack, pulmonary embolism and neurological cognitive problems. Therefore, physicians can miss the underlying cause and fail to order the appropriate tests for a proper diagnosis.
The human immune system fights infections by producing antibodies in the blood that bind with foreign invaders, like bacteria and viruses, and destroys and removes them, the Web site said.
According to the Web site, in autoimmune conditions such as APS, the immune system malfunctions and makes antibodies against normal tissue and organs.
These antibodies are called self-reactive and cause damage to the normal function of blood flow. The targets of the self-reactive antibodies are B2-glycoprotein 1 and prothrombin. The condition is diagnosed by assessment of clinical symptoms and laboratory blood tests.
The goal of the APS Foundation of America is to raise awareness and educate both the public and the medical community. For more information