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.
• 2/18/2008 - 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!!
We guess after
you read these links you will understand why we do not promote the use of these
machines. They are inaccurate.
Just say NO to the INR
machines. They DO NOT WORK FOR APS
PATIENTS.
The APSFA has
plenty of documents from EVERY company that makes these machines saying
they do not work with APS patients. This includes the home models and the
professional models.
We have several
patient stories. The out of pocket costs are crazy and the recalls on these
machines and their strips are crazy.
Unless you are ok having strokes,
DVTs, TIAs and issues because the machine was reading off and up to a 30% +/-
deviation from a lab draw. You will have to sign a liability waiver for every
machine that is out there for this diagnosis.
These companies know they are bad for
us.
We have read posts from people who just add 2 points
or subtract 2 from their read becuase that is what their comparision was
different. Dangerous. Down right dangerous.
In the end, it is your
decision on if you decide to use these machines or not. We do know that you can
not say the APSFA did not attempt to educate you on these machines.
Buyer
Beware.
(And Good luck, if you get one or own one! )
Many
are not fully informed about the APS and antibodies and are brainwashed by
people who had great results...but now some are finding out their
results weren't so great and are now finding out just how off their INRs
were....along with a few other things.
And the
companies are now admitting to them it IS the machine yet these machines are still be
promoted. Why? Money? Kick Backs?
Here is the supporting information
for our stance:
*INR Monitoring in Patients with
Antiphospholipid Antibodies with Finger Stick INR Machines. by: Stephan Moll, MD. A superb
way to monitor INRs (International Normalized Ratio) in patients on oral
anticoagulants who do NOT have antiphospholipid antibodies (APLA) is though use
of "point of care instruments", where the INR is tested on blood from a finger
stick. This method gives fast results and is used by many physicians' offices
and by some patients at home. However, in patients with APLA on oral
anticoagulants these instruments may give inaccurate readings.
Anticoagulation
Forum "Recognizing the growing importance and widespread use of antithrombotic
therapy for individuals with thromboembolic disorders, the Forum seeks to
develop a network of professionals committed to this therapeutic modality in
order to exchange information, provide medical education, and pursue scientific
investigation, with the ultimate goals of providing professional development and
enhancing the quality of medical care."
CoagCheck Systems Literature clearly states that
this machine has problems with APS patient and patients with the Lupus
Anticoagulant. This is for the CoaguChek, CoaguChekS and CoaguCheckXS. Please
call technical support at 800-428-4674 for more information. Those using this
machine should be getting vein draw comparisons at least every 6-8 weeks.
CoaguChek &
CoaguChek S Strip Insert Literature clearly states that
this machine has problems with APS patient and patients with the Lupus
Anticoagulant. This is for the CoaguChek & CoaguChekS. Please call technical
support at 800-428-4674 for more information. Those using this machine should be
getting vein draw comparisons at least every 6-8 weeks.
CoaguChek XS System - Patient
Experience Registration Required to read story. "I called Roche and expressed my
concerns about the reliability of the machine. They told me that at higher INRs
(above 4.0) the machine becomes less reliable. They also told me that the
machine doesn't work very well for people with Antiphospholipid Antibodies
because these same antibodies are on the test strips! She said that especially
when someone with APS is having a flare up the machine may not work well due to
the high level of antibodies in the blood."
CoaguChekXS
Strip Insert Literature clearly states that this machine has problems with APS patient
and patients with the Lupus Anticoagulant. This is for the new CoaguChekXS.
Please call technical support at 800-428-4674 for more information. Those using
this machine should be getting vein draw comparisons at least every 6-8 weeks.
For those inquiring about HOME INR
machines... Registration Required to read this patient experience. "You're putting your
life into a machine that is KNOWN to be wrong with APS patients...think
TWICE...THREE times...FOUR times and Just say NO!"
Hemochron Jr. Package
Insert Literature clearly states that this machine has problems with APS patient
and patients with the Lupus Anticoagulant. Those using this machine should be
getting vein draw comparisons at least every 6-8 weeks.
Home INR Machines and
Antiphospholipid Antibodies Home INR machines do not give
accurate readings in about 1/3 rd of patients with antiphospholipid antibodies
who are on warfarin. This is not due to the machine malfunctioning, but likely
due to antibodies interfering with the test method of the home INR machines. In
one third of patients with antiphospholipid antibodies the INRs read by the home
INR machines are unreliable: (a) they either read too high, compared to INRs
tested in a laboratory from an i.v. stick (reference 2), or (b) the instruments
flash up an error message (reference 1). This inaccuracy is likely caused by the
presence of the antiphospholipid antibodies. Since antibody levels can fluctuate
over time, the instrument may give accurate readings at times when the antibody
levels are low, but inaccurate ones at times when the levels are higher. This is
a phenomenon not unique to the Coaguchek® instrument, but is also seen with the
ProTime® and the INRatio® instruments (reference 1,2). In patients who do not
have antiphospholipid antibodies the home INR machines give reliable readings
and are a good way to monitor warfarin therapy (ref. 3). Last Updated: 8/22/06
INRatio Monitor
and Interfering Substances Anti-phospholipid antibodies
can disrupt the phospholipid in the PT reagent that is necessary for the
clotting reaction to occur thus artificially elevating the INR.
Point-of-care
testing of the international normalized ratio in patients with antiphospholipid
antibodies. SL
Perry, GP Samsa, and TL Ortel Thromb Haemost, December 1, 2005; 94(6): 1196-202.
Antiphospholipid antibodies can influence the results of clotting tests in a
subset of patients, which can be a major obstacle in monitoring warfarin.The aim
was to determine if point-of-care testing of the International Normalized Ratio
(INR) is influenced by antiphospholipid antibodies. Please note the manufacture
of this machine helped fund this study.
Protime Machine Representatives clearly state
that this machine has problems with APS patients and patients with the Lupus
Anticoagulant. Waiver for patients with APS must be signed. Those using this
machine should be getting vein draw comparisons at least every 6-8 weeks.
ProTime
Microcoagulation System Package Insert Literature clearly states that
this machine has problems with APS patient and patients with the Lupus
Anticoagulant. Those using this machine should be getting vein draw comparisons
at least every 6-8 weeks.
Thoratec
Receives FDA Warning Letter, Plans Recall (ProTime) Thoratec's International
Technidyne Corp. (ITC) division has received an FDA warning letter citing
concerns about its quality systems, specifically those related to certain lots
of its ProTime System anticoagulation monitoring device.....of incorrect
readings of patient blood coagulation levels.
Thank you to everyone who donated to decorate our tree! Because of your generous donations, we were able to raise $1095 with this year's Giving Tree!
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.
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.
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.
* 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).
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
Antiphospholipid syndrome (APS) is known to cause heart attacks, strokes and transient ischemic attacks (TIA), brief stroke-like episodes.
A heart attack occurs when the supply of blood and oxygen to an area of heart muscle is blocked, usually by a clot in a coronary artery. Each year, over one million people in the U.S. have a heart attack and about one-half die. Unfortunately, many heart attack victims wait two hours or more after symptoms begin before they seek medical help. This delay can result in death or lasting heart damage.
A stroke, or "brain attack," occurs when blood circulation to the brain fails. Brain cells can die from decreased blood flow and the resulting lack of oxygen. There are two broad categories of stroke: those caused by a blockage of blood flow and those caused by bleeding. While not usually fatal, a blockage of a blood vessel in the brain or neck, called an ischemic stroke, is the most frequent cause of stroke and is responsible for about 80 percent of strokes.
A TIA is a transient stroke that lasts only a few minutes. It occurs when the blood supply to part of the brain is briefly interrupted.It is recommended anyone under the age of 50 who has had a heart attack, stroke or TIA should be tested for APS.
The APS Foundation of America is the only United States health agency dedicated specifically to bringing national awareness to APS. We are a volunteer-run, community-based, non-profit organization dedicated to spreading awareness and support to those with the disease.
Knowing more about APS can make all the difference. Get in the know and Get in the Flow!
For more information Contact: Christina "Tina" Pohlman at Phone: 608-782-2626 Website Address:http://www.apsfa.orgEmail Address:apsfa@apsfa.org
Have you bought your APS Awareness T-shirt or canvas bag yet? Now is a great time to do so and help bring awareness to APS!! We have a large variety of QUALITY items and the clothing comes in a wide variety of colors and sizes! You may even find a little something for Dad! Check out our CafePress store to buy APS Awareness items this June!!
Here is a coupon for your purchase!
Save $5 when you spend $50 or more! ----------------------------- Enter the coupon code MOTIONOPTION when checking out. ----------------------------- Coupon expires 6/19/07... so hurry!
Antiphospholipid Antibody Syndrome (APS), is found more often in women
than men with 90 percent of all APS sufferers being women.
APS is an autoimmune disease that causes blood clots, premature births and even miscarriages.
Women with APS may have difficulties with pregnancy. During pregnancy,
women are at higher risk of developing blood clots and preeclampsia. In
APS, pregnancies are thought to be lost because blood clots form in the
placenta and starve the baby of nutrition. Some women may have trouble
getting pregnant, while others may experience repeated miscarriages.
Blood clots that develop in the placenta can cause fetal growth
problems, fetal distress, preterm birth, or pregnancy loss.
APS pregnancies are not normal. Normal pregnancy is 40 weeks. In APS,
it is more common to deliver the baby between 30-35 weeks, and between
3-5 pounds. Once born, the babies do fine.
Over the long term, many doctors recommend women continue to take a low
dose of aspirin to reduce the risk of developing dangerous blood clots.
Many women with APS are unaware they have the condition, but it can be
diagnosed with a blood test. Doctors may consider the diagnosis when a
woman has repeated, unexplained pregnancy loss.
Many women who have problems with APS during pregnancy are completely
fine when not pregnant. Others do go on to develop problems with
clotting. Currently there is no way of telling which women will be
unlucky, until a clot actually occurs.
Infertility has also been linked to antiphospholipid antibodies.
Testing for these antibodies is becoming routine in infertility clinics.
The APS Foundation of America is the only United States health agency
dedicated specifically to bringing national awareness to APS. We are a
volunteer-run, community-based, non-profit organization dedicated to
spreading awareness and support to those with the disease.
Knowing more about APS can make all the difference. Get in the know and Get in the Flow!
For more information Contact: Christina "Tina" Pohlman at Phone:
608-782-2626 Website Address:http://www.apsfa.org. Email
Address:apsfa@apsfa.org
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 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:www.apsfa.orgEmail Address: apsfa@apsfa.org
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.
Just say NO to the INR
machines. 
) 
