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November 21st, 2010

10:02 pm: Fall/Winter 2010 volume of our quarterly newsletter, "Antiphospho...What??"

The Fall/Winter 2010 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/APSFAVol19FallWin10.pdf

The next volume will be coming out mid February 2011.

Please let us know if there are any topics that you'd like our Medical Advisers 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 advisers.

We are still in need of patient stories (esp about Men and Teens / 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.

Please follow our current guidelines when submitting an article:
• Send your story/article to articles@apsfa.org
• Patient stories and most articles should be approx 500-750 words long and contain a title
• Articles should be written at a 5th-8th grade reading level
• Please try to include a picture when submitting a patient story
• Patient stories should read like an autobiography—generally from diagnosis to present time, but it doesn’t have to

Please use previous patients stories as your guideline.  They can be found here: http://www.apsfa.org/newsletters.html

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.

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

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, american, association, newsletter



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November 1st, 2010

10:29 pm: International Medical Summit Held in Miami to Stimulate Collaborative Clinical Research on Antiphosp


International Medical Summit Held in Miami to Stimulate Collaborative Clinical Research on Antiphospholipid Syndrome

Disease Responsible for 1 out of 3 Strokes in Young People


1 out of 4 Recurrent Miscarriages

Goal to Find a Cure and Heighten Awareness About this Devastating Disease


Miami, Nov. 1, 2010 – Antiphospholipid Syndrome (APS) is a condition that may be responsible for up to one-third of strokes in people under age 50, up to one-fifth of all cases of blood clots in large veins, and one-quarter of recurrent miscarriages. Nonetheless, relatively few randomized clinical trials have been conducted involving people with APS, and those completed have included small numbers of participants.

To stimulate an international discussion on this topic, the APS Clinical Research Task Force is hosting a summit titled, “Breaking Out of the Box,” in Miami from Nov. 2-4, 2010. The task force, co-chaired by Hospital for Special Surgery physician-scientists Doruk Erkan, M.D., and Michael D. Lockshin, M.D., was formed as a result of the 13th International Congress on Antiphospholipid Antibodies in April 2010. The two dozen summit attendees will include experts in the field of APS research from around the world, including Australia, Brazil, Italy, the Netherlands, the United Kingdom and the United States.

“APS research has not progressed substantially over the past 25 years, after researchers developed a simple blood test to identify the antibodies,” said Dr. Lockshin, director of the Barbara Volcker Center for Women and Rheumatic Disease at Hospital for Special Surgery in New York City. “As a result, we are gathering rigorous thinkers to identify critical APS research questions and establish the process for moving forward in a coordinated, strategic international effort.”

APS involves the formation of abnormal blood clots in arteries and veins, which puts people at risk for stroke and pregnancy complications. Blood clots form because the immune system mistakenly produces antibodies against phospholipid-binding plasma proteins (aPL).

APS can be diagnosed through repeated blood testing. While no cure exists and the cause is still unclear, treatment includes long-term blood thinning to prevent clots from forming. This condition can occur in conjunction with other autoimmune diseases, such as systemic lupus erythematosus and rheumatoid arthritis.

Several major issues have slowed the progress of APS clinical research, such as the fact that there are few standardized tests to detect the antiphospholipid antibodies, study participants have a range of symptoms, the biology underlying the condition is not completely understood, and smaller efforts have not recruited enough study participants.

“There is an urgent need for a true international collaborative approach to design and conduct large-scale clinical trials involving people who have aPL,” said Dr. Erkan, clinical co-director of the Mary Kirkland Center for Lupus Care at Hospital for Special Surgery. “At this summit, we hope to stimulate dialogue about this condition and formulate a solid research question from which to generate future clinical trials that are feasible, interesting and relevant.”

The summit will include presentations about transforming and globalizing APS research, lessons learned from APS research registries, and several group brainstorming sessions for identifying, refining and finalizing research questions. Scientists will conclude by setting a timeline for critical tasks to complete in order to proceed with clinical studies.

The conclusions of the APS Clinical Research Task Force and the preliminary outcomes from the Miami summit will be presented at the upcoming American College of Rheumatology annual scientific meeting in Atlanta, in poster session A on Nov. 8 from 9 a.m.-11 a.m. as Abstract #6, Antiphospholipid Syndrome (APS) Clinical Research Task Force (CRTF) Report.

About Hospital for Special Surgery  

Founded in 1863, Hospital for Special Surgery (HSS) is a world leader in orthopedics, rheumatology and rehabilitation. HSS is nationally ranked No. 1 in orthopedics, No. 3 in rheumatology, and No. 16 in neurology by U.S.News & World Report (2010-11), and has received Magnet Recognition for Excellence in Nursing Service from the American Nurses Credentialing Center, and has one of the lowest infection rates in the country. From 2007 to 2011, HSS has been a recipient of the HealthGrades Joint Replacement Excellence Award. A member of the NewYork-Presbyterian Healthcare System and an affiliate of Weill Cornell Medical College, HSS provides orthopedic and rheumatologic patient care at NewYork-Presbyterian Hospital at New York Weill Cornell Medical Center. All Hospital for Special Surgery medical staff are on the faculty of Weill Cornell Medical College. The hospital's research division is internationally recognized as a leader in the investigation of musculoskeletal and autoimmune diseases. Hospital for Special Surgery is located in New York City and online at http://www.hss.edu/.


Phyllis Fisher
fisherp@hss.edu
212-606-1197


Tracy Hickenbottom
hickenbottomt@hss.edu
212-606-1197


###

Sent out by the APS Foundation of America, Inc

Founded in 2005, the APS Foundation of America, Inc. is the leading 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, american, hss, hospital for special surgery, association



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August 25th, 2010

10:59 pm: The Summer/Fall 2010 volume of our quarterly newsletter, "Antiphospho...What??" is ready to be down

Hello, we hope this blog finds you well!!

Thank you to everyone who celebrated World APS Day with us on June 9th, APS Awareness month in June and for your continued support! Both events were a HUGE success!!

The SUMMER/FALL 2010 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/APSFAVol18SumFall10.pdf

The next volume will be coming out in November, 2010.

We are in need of non-patient story articles for upcoming newsletters such as book reviews, poems, recipes, and articles written by children, spouses, significant others, other relatives, or caretakers of APS patients. Tips from one patient to another would also be another good topic for an article. Or maybe you have something else you'd like to share with other APS patients? We don't have many of these types of articles.

We have a number of patient stories waiting in the wings, but we will never turn them away. We have gotten a few patient stories from men lately and we thank you! We like to remind people that APS is not just a woman's disease however we can! Please, keep those patient stories and articles coming! We do appreciate each and every one that we receive.

Please submit articles to the following email address: articles@apsfa.org. Guidelines for writing articles can be found here: http://www.apsfa.org/newsletters.html#guidelines.  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.

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.

Thank you again 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 and if you know anyone who may be interested in writing articles for us, please pass this email along.

Please remember to check our website for any changes at the following link: http://www.apsfa.org/new.htm

Follow us on Facebook: http://www.facebook.com/APSFA and Twitter: http://twitter.com/apsfa

Thank you for your continued support!

APS Foundation of America Staff
Tina Pohlman, Heidi Ponagai & Cindi Brookes

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, american, association



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June 9th, 2010

11:21 am: The APS Foundation of America, Inc Announces World APS Day, June 9th
FOR IMMEDIATE RELEASE

Date:  06/7/2010
Contact:
Christina "Tina" Pohlman
Phone:
608-782-2626
Website Address:
http://www.apsfa.org
Email Address:
  apsfa@apsfa.org

The APS Foundation of America, Inc Announces World APS Day, June 9th

The Antiphospholipid Antibody Syndrome Foundation of America, Inc. (APSFA) urges the public, as well as the medical community, to learn more about this rare disease. APS Awareness Month runs throughout June.

The APSFA is also proud to announce that June 9 is World APS Day.  The APSFA would like to bring more attention & awareness to this "rare" autoimmune disease.

APS is an autoimmune disorder.  Such illnesses occur when the body’s tissues are attacked by its own substances. In APS, the body recognizes certain components of blood or cell membranes as foreign substances and produces antibodies--a specialized protein the body uses to prevent infection--against them. It is the major cause of strokes in persons under 40 years old, blood clots (thrombosis) – which can lead to heart attack or stroke – vision disturbances and repeated, otherwise unexplainable miscarriages.

APS can be diagnosed with a simple blood test. It frequently is found in conjunction with lupus, another autoimmune disorder that primarily targets women.Please join us in blogging about your experience living with Antiphospholipid Antibody Syndrome (APS) - whether you are the patient, caretaker, friend, or loved one of an APS patient. Together, we can bring awareness to this disease.  We are also requesting everyone to wear burgundy on June 9th!!  Please go to
http://www.apsfa.org/worldapsday.htm for more information.

Knowing more about APS can make all the difference. Help us color the world burgundy on June 9th, get in the know and Get in the Flow!

Founded in 2005, the APSFA is the leading United States health agency dedicated specifically to bringing national awareness to APS. We are a volunteer-run, community-based, non-profit organization.

For more information Contact: Christina "Tina" Pohlman at Phone: 608-782-2626 Website Address:
http://www.apsfa.org. Email Address: apsfa@apsfa.org

###

NOTES TO EDITORS


• The key blood tests are Anticardiolipin (aCL) antibodies (IgG, IgM, and IgA), Lupus anticoagulant (LAC) – a panel of blood clotting tests that may include the dilute Russel Viper venom time (dRVVT), lupus aPTT, mixing studies, and hex phase phospholipid test, platelet neutralization procedure and Antibodies to b2-glycoprotein I (IgG, IgM, IgA).

• The conservative estimate of people at risk from Antiphospholipid Antibody Syndrome (APS) is 1% - 5% of the population.

• In pregnancy clotting of the placenta can cause miscarriage or stillbirth. Typically, women are not tested for APS until after three consecutive miscarriages.

• The recognition and treatment of APS improves the chances of preventing miscarriage from below 20% to above 80%.

• Some cases are misdiagnosed as multiple sclerosis.  Some APS patients also have Lupus.

• Founded in 2005, the APS Foundation of America, Inc. is the leading 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

• All figures, unless otherwise stated, are from
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, american, association, press, release


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June 3rd, 2010

06:18 am: JUNE IS APS AWARENESS MONTH: GET IN THE FLOW!

FOR IMMEDIATE RELEASE

Date: 06/01/2010
Contact:
Christina "Tina" Pohlman

Phone:
608-782-2626

Website Address:
http://www.apsfa.org

Email Address:
apsfa@apsfa.org

JUNE IS APS AWARENESS MONTH: GET IN THE FLOW!

The Antiphospholipid Antibody Syndrome (APS) Foundation of America, Inc. (APSFA) urges the public, as well as the medical community, to learn more about this rare disease. APS Awareness Month runs throughout June.

APS is an autoimmune disorder. Such illnesses occur when the body’s tissues are attacked by its own substances. In APS, the body recognizes certain components of blood or cell membranes as foreign substances and produces antibodies--a specialized protein the body uses to prevent infection--against them. It is the major cause of strokes in persons under 40 years old, blood clots (thrombosis) – which can lead to heart attack or stroke – vision disturbances and repeated, otherwise unexplainable miscarriages.


APS often is found in conjunction with lupus, another autoimmune disorder that primarily targets women.

Knowing more about APS can make all the difference. Get in the know and Get in the Flow!

Founded in 2005, the APSFA is the leading United States health agency dedicated specifically to bringing national awareness to APS. We are a volunteer-run, community-based, non-profit organization.


For more information Contact:
Christina "Tina" Pohlman at Phone: 608-782-2626
Website Address: http://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, association, american, press, release

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May 22nd, 2010

11:30 am: Spring/Summer 2010 volume of our quarterly newsletter, "Antiphospho...What??" is Available
The Spring/Summer 2010 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/APSFAVol17SprSum2010.pdf

The next volume will be coming out mid August 2010.


Please let us know if there are any topics that you'd like our Medical Advisers 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 advisers.
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.

Please follow our current guidelines when submitting an article:


• Send your story/article to articles@apsfa.org

• Patient stories and most articles should be approx 500-750 words long and contain a title

• Articles should be written at a 5th-8th grade reading level

• Please try to include a picture when submitting a patient story

• Patient stories should read like an autobiography—generally from diagnosis to present time, but it doesn’t have to


Please use previous patients stories as your guideline.  They can be found here: http://www.apsfa.org/newsletters.html


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.


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


Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, newsletter


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May 2nd, 2010

11:30 am: Signature Tag Fundraiser
Tags, or signature tags are used primarily on forums or  in the signature of emails. We are offering customizable tags  representing various awareness causes including and related to APS:  Lupus, FVL, Thrombophilia, Hughes Syndrome, Heart Attack, Stroke,  APS/Lupus, and Infant Loss.

Tags can be ordered for a $5.00 donation to the APSFA using the form  below. If you would like multiple tags we are also offering 3 for a  $10.00 donation. These donations are tax deductible and you will be  receiving a tax receipt via email after your purchase.


Tags will be delivered via the PayPal payment email address, so if you  need them sent to another email, please indicate the email address you'd  like them sent to in the extra comments section when checking out. If  you need a different delivery method than email, please indicate this in  the comments section and we will work something out.

Only donations via PayPal will be accepted and only by using the order form below.


Please allow a 72 hour turnaround time from order to delivery.


To order click here:
http://www.apsfa.org/fundraisers/tags.htm

© APS Foundation of America,  Inc

To order these tags click here:
http://www.apsfa.org/fundraisers/tags.htm

If you need a specific size, let us know and we'll make one for you!  These are all copyright of the APSFA.

DO NOT ALTER THESE GRAPHICS. For  HTML codes, please contact us. APSFA ©2005 - 2010. Our copyright Notice  can be located here:
http://www.apsfa.org/copyright.htm

WARNING: We will enforce our copyright!


Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, fundraiser, signature, tags


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May 1st, 2010

09:16 pm: APS Awareness, Infant Loss Awareness Ribbon & APSFA Logo Lapel Pin Sales

                           

                                          

We have new lapel pins  available! We now carry 3 different  types of lapel pins: Burgundy Awareness Ribbon, APSFA Logo, and Infant  Loss Awareness Ribbon. The pins  are as shown above. The awareness ribbon pins measure 1 inch in size.  They are die struck silver with enamel colorfill.  Each  pin comes with a clutch back and is individually poly  bagged. The  APSFA Logo pins measure 1 inch in diameter. Each pin also comes with an APS information card that measures 3 1/2 inches by 5 1/2 inches and is printed on heavy paper  stock. These cards  would be good to leave in a doctor's  office or post on a bulletin board.  A view of the card can  be seen below. Awareness Ribbon Pins are $5.00 each and the APSFA Logo Lapel pins are $7.50 each.                         

                                                               
Burgundy is also the ribbon color of the following causes: Antiphospholipid Antibody Syndrome, Brain Aneurysm, Cesarean (worn  upside down), Factor V Leiden, Headaches, Hemangioma and Vascular Malformation, Hospice  Care, Multiple Myeloma, Thrombophilia, William's Syndrome.                       

Here is a sample of the information card                                  
                

                                  

Awareness Ribbon Pins are  $5.00 and  APSFA Lapel Pins are & $7.50 each which covers shipping,  tax and a  small donation to the APS Foundation of America, Inc.                

If you'd like extra Information cards  they are 4 for  $1.00.                                 
                  

Payments accepted are:
  Paypal, Credit Cards through Paypal, Money Order, Personal Check, and Cash

To Order go to: http://www.apsfa.org/fundraiser.htm

Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, fundraiser


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March 7th, 2010

06:25 pm: Winter/Spring 2010 volume of our quarterly newsletter, "Antiphospho...What??" is Available

The Winter/Spring 2010 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/APSFAVol16WinterSpring2010.pdf

The next volume will be coming out mid May, 2010.


Please let us know if there are any topics that you'd like our Medical Advisers 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 advisers.


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.

Please follow our current guidelines when submitting an article:
• Send your story/article to articles@apsfa.org

• Patient stories and most articles should be approx 500-750 words long and contain a title

• Articles should be written at a 5th-8th grade reading level

• Please try to include a picture when submitting a patient story

• Patient stories should read like an autobiography—generally from diagnosis to present time, but it doesn’t have to


Please use previous patients stories as your guideline.  They can be found here:
http://www.apsfa.org/newsletters.html

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.


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


Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, newsletter


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March 6th, 2010

03:16 pm: Medical Alert Discount in Honor of DVT Awareness Month

In honor of DVT Awareness Month, for the month of March MedicAlert Foundation is pleased to announce a special $10 discount for individuals diagnosed with Deep-Vein Thrombosis. (Note: offer is not strictly limited to persons with DVT.)

If an individual with a history of DVT requires emergency medical attention, emergency responders need to be made aware of current medical conditions and medications so that the individual can be rapidly transported to a proper facility for DVT or PE treatment.


MedicAlert® IDs can save lives in emergencies.  We offer free engraving of your medical information   i.e. taking Coumadin, Warfarin, etc. - on a genuine MedicAlert bracelet or necklace along with our 24-hour Emergency Response phone number. MedicAlert s medically trained staff is always ready to answer the call and provide your critical information to medical staff during your time of need.  In addition, we also notify your family contacts if there is an emergency.


To become a MedicAlert member, call 1-800-432-5378 and mention code 5804 or visit
http://www.medicalert.org/dvt to save $10. The $10 discount applies to new Advantage membership enrollment (reg. $39.95) and is valid through March 31, 2010. Choose from over 100 styles of IDs, starting as low as $9.95.  IDs not included in the enrollment fee.

The APS Foundation of America, Inc does not make commissions or profits  from the Medic Alert.  This is being posted purely as a courtesy to you,  as an APS patient.


Keywords: APSFA, APS Foundation, antiphospholipid antibody syndrome, lupus, stroke, dvt, pe, thrombosis, clot, migraine, hughes syndrome, miscarriage, america, usa, anticoagulant, heart attack, APS, Medic Alert


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