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Antiphospholipid Antibody Syndrome (APS) On The Net

This Page Was Created On 3/22/98, Last Modified On 12/18/99

Our MESSAGE Board on Delphi is up and running. Its a YEAR old, and there are Thousands of messages for you to look at! Lots of people like YOU who also have APS who want to talk. Come Join US!! See Below For Link!!

Information and Links concerning Antiphospholipid Antibody Syndrome, Antiphospholipid Syndrome, APLS, APS

This Site Was Created By Mark Waxman
Keywords: Antiphospholipid Antibody Syndrome, Antibodies, APLS, APS, Blood, Clot, Clotting, Disorder, Heart, Lupus

DISCLAIMER

The information presented here is for informational and educational purposes only and should not be used for diagnostic or treatment purposes, in other words, they are not a substitute for medical care or treatment by a qualified professional. If you believe that you have Antiphospholipid Antibody Syndrome, see your Doctor or Healthcare Professional immediately. The author of this web page is NOT a Doctor or Healthcare Professional but IS an individual who has been diagnosed with Antiphospholipid Antibody Syndrome.


What Is Antiphospholipid Antibody Syndrome, (APS)?

Antiphospholipid Antibody Syndrome is a very rare blood disorder characterized by recurring blood clots that usually appear before 45 years of age. In young women, it may be associated with spontaneous abortions for no aparent reason. There may be a family history of blood clotting disorders in some cases. In the case of the author of this site, there was no known family history of blood clotting disorders.

Physicians may use slightly different definitions to diagnose APS. In general, you need to have a positive blood test for either the Lupus Anticoagulant or the Anticardiolipin Antibody. In addition to the blood tests you must also have one of the following criteria:

1) A history of blood clots, thrombosis

2) Low Platelet Count, thrombocytopenia

3) Recurrent pregnancy loss

There may also be skin, heart and nervous system abnormalities.

Why Have A Website for APS?

In 1993, I experienced a blood clot behind my right knee. In 1994 I experienced another blood clot in the same place. During that second hospitalization some abnormalities were noticed during routine blood tests. After three days of evaluation I was diagnosed as having APS, a blood disorder that I'd never heard of.

On Febuary 5, 1996, I experienced another blood clot, this time the clot was in my heart and I experienced a heart attack requiring an angioplasty. Since that episode, I've been interested in learning more about this rare blood disorder.

Finding books that referenced APS was virtually impossible. There were several articles published in medical journals, but for the layperson, these were not easy to obtain, or understand.

This web site has been established to allow you to more easily find the information that you need regarding APS. It is not my intention to copy and publish the information contained in those sites, although, upon occasion, I may qoute from them. The links I will provide here will take you to sites that contain information regarding APS. Once at those sites you can search for the information you require and copy it for your own use, subject to any restrictions (copyright or otherwise) that the particular site has.

If you find interesting sites that I haven't listed, but believe should be, please email me at the address below so I can review the site for a possible link to this one.

Thank you, Mark

HELP!!!!

If you have APS/APLS I am very interested in learning about you. I am hoping for answers to the following questions. My intention is to start compiling a database of information about APS/APLS that I can publish to this website so that others who suffer from this disorder can share the information with their doctors and families.

1) How old were you when you were first diagnosed with APS/APLS?

2) Are you male or female?

3) How long have you had APS/APLS?

4) What specific physical symptoms have you experienced?

5) What neurological symptoms have you experienced?

6) Are you satisfied/disatisfied with your treatment? Why?

7) Do you have any other illnesses besides APS/APLS (perhaps Lupus)?

8) What drugs has your doctor prescribed as part of your treatment/therapy for APS/APLS?

9) Anything else that you would care to share with me.

I do not need your real name if you don't want to give it, or your address, or your telephone number. Your email address will only be used by me to advise you of the occasional updates to this webpage and about the data I hope to compile about APS/APLS.

Thanks for your cooperation.

If you or a family member suffer from APS/APLS please email me with the information: waxman@mindspring.com THANK YOU!!!!!

If YOU Think You Are Having A HEART ATTACK

CALL an AMBULANCE or Have Someone DRIVE you to the Hospital

How did I know that I was having a heart attack? I didn't. I had several symptoms in the days leading up to my heart attack.

For weeks, perhaps several months leading up to my heart attack, I had severe heartburn at night, bile rising into my throat, virtually every night.

On Saturday, February 3, my wife and I, our children, and some friends, were at Borders books browsing. I knew I was having a problem when I couldn't hold a book with my hands. I did experience some discomfort in my left arm at that time.

On Sunday, February 4, I experienced severe chest pain while going UP and DOWN the stairs in my home. Again, I thought nothing of this. I had moved a heavy refrigerator the week before and thought it was a delayed reaction to moving a heavy kitchen appliance.

On Monday morning, February 5, I woke up with some chest discomfort, but went to work. I had a new employee starting that day and wanted to welcome her and take her to lunch. All morning long I was experiencing some chest pain, but kept ignoring it. When I took the new employee to lunch, I couldn't eat, but did excuse myself twice to go to the mens room because of the severe discomfort I had in my chest. After she finished eating, I drove her back to the office and let her go in while I waited out in my car wondering several things:

1) Should I walk into the office and "grin and bear it?"

2) Should I use my car phone to call an ambulance?

3) Should I walk into the office and have them call 911?

4) Should I drive to a hospital I was comfortable with to see what the hell was wrong?

Of those four choices, (two of which were right and two which were wrong) I picked one of the wrong ones, number 4. I drove myself 20 minutes to Clevelands Mt. Sinai Hospital, parked on the second floor of the parking garage, walked through the front doors of the hospital in pain, asked for directions to the Emergency Room, walked to Emergency, and then told them I was experiencing chest pains.

Needless to say the Hospital took immediate action, diagnosed a Heart Attack in progess and began treatment.

IF YOU THINK YOU ARE HAVING A HEART ATTACK, LET SOMEONE KNOW -- IMMEDIATELY. DON'T DRIVE, DON'T WALK, CALL 911.


******** DRUG INTERACTION ALERT ********

The March 4, 1998, Journal of the American Medical Association, (JAMA) reports that "Prolonged use or high doses of Acetaminophen, (contained in Tylenol and some other non-asperin products), while using the anticoagulant Warfarin, (Coumadin), could substantially increase the risk of bleeding and hemorrhage."

Coumadin, a blood thinner, may be part of the therapy your doctor or healthcare professional has prescribed for you if you have APS, so this report is something that you should be aware of. You can find the report on the JAMA website in the archives for March 4, 1998.

For more information on this, please consult your doctor or healthcare professional.

Link to the Journal of the American Medical Association

What Are Antiphospholipid Antibodies?

Under normal circumstances, antibodies are protiens made by your immune system to fight substances recognized as foreign by your body. Some examples of foreign substances are bacteria and viruses. Sometimes the body's own cells are recognized as foreign. In the antiphospholipid antibody syndrome, the body recognizes phospholipids, (part of a cell's membrane), as foreign and produces antibodies against them. Antibodies to phospholipids (antiphospholipid antibodies) can be found in the blood of some people with LUPUS, but they are also seen in people without any known illness.

Link to Caring/Hygeia, An Online Journal for Pregnancy and Neonatal Loss
Link to the Lupus Foundation of America
Link to NORD, the National Organization for Rare Disorders

NEWSGROUP/CHAT LINE

The Chat Group is going strong. You can meet other with APS most Sunday evening, at 9pm Eastern Standard Time.

Set your browser to Delphi at the link below and you can start communicating in an open forum with others who have APS, their families, and friends!!!!

Link to the Antiphospholipid Antibody Chat Forum

American Autoimmune Related Diseases Association, Inc.

The American Autoimmune Related Diseases Association, (AARDA), is dedicated to the eradication of autoimmune diseases and the alleviation of suffering and the socioeconomic impact of autoimmunity through fostering and facilitating collaboration in the areas of education, research, and patient services in an effective, ethical and efficient manner.

This is a very interesting site and well worth your time in checking it out.

Link to the American Autoimmune Diseases Association, Inc.

The AARDA has an excellent article on APS.

Link to AARDA article on APS

Thrombosis Interest Group of Canada

A new friend from the Internet, Jenny S., who also has APS, has recommended this site.

The Thrombosis Interest Group of Canada, is dedicated to furthering education and research in the prevention and treatment of thrombosis.

The group consists of Canadian health care professionals from medicine, nursing and laboratory technology whose primary interest is investigation and management of thromboembolic disease.

This is yet another useful resource on the web.

Link to Thrombosis Interest Group of Canada

Medscape - The Online Resource For Better Patient Care

Medscape is a FREE service. You must register with a User Name and Password and then you can search and review their database. There are several articles regarding APS here, for the most part regarding women and pregnancy. This looks like a useful service.

Link to Medscape, the Online Resource for Better Patient Care

National Library of Medicine

The National Library of Medicine (NLM) has public databases that you can easily access. There are numerous articles about APS. In their search function just type Antiphospholipid Antibody Syndrome and browse. Please note that they do have restrictions on use and do have a downloading policy.

Link to the the National Library of Medicine

The National Institutes of Health

The National Institutes of Health also has an online database/search facility. It is an interesting site to visit. There are articles concerning APS referenced on this site.

Link to the National Institutes of Health

MedExplorer - Health/Medical Internet Search Engine

MedExplorer is an internet search engine. APS hasn't yet been listed with this site, however, other important medical topics are covered such as Health Insurance, Diseases/Disorders, Pharmaceuticals, and Research. This is an interesting site to keep bookmarked in your browser.

Link to MedExplorer

Web MD Health

WebMDHealth , is a free health community providing information and support for people with serious and chronic illnesses. WebMD manages communities for asthma, breast cancer, depression, diabetes, fibromyalgia, chronic fatigue syndrome, HEART DISEASE, prostate cancer, obesity, and a number of women's health conditions. WebMD requires completion of a registration process, which includes a voluntary health questionaire, prior to becoming a member of WebMD and entering the service.

Link to Web MD Health

INCIID - InterNational Council on Infertility Information Dissemination, Inc.

INCIID is a nonprofit organization dedicated to educating infertile couples about the latest methods to diagnose, treat and prevent infertility and pregnancy loss. APS/APLS can cause miscarriages in pregnant women. This site has message boards that will allow you to communicate with others who have APS/APLS and who have experienced miscarriages or other problems during pregnancy.

Link to INCIID Homepage
Link to INCIID Search Engine

American Heart Association

This link is to the official web site of the American Heart Association, (AHA). When using search engines you may come across web sites that are for State and local affiliates of the AHA. This is the AHA National homepage. There is a search function directly from the homepage which will allow you to search topics related to APS.

Link to the American Heart Association

APLS Antiphospholipid Standardization Laboratory

This is an interesting site. The Antiphospholipid Standardization Laboratory provides general information for "rheumatologists, researchers, and technical personnel involved in the clinical diagnosis and management of APS" and "will find general information on the syndrome, indications and limitations of testing, and an outline of the various tests performed at APLS Laboratory". They say that they are the "primary reference laboratory for aCL testing". APLS is located at Morehouse School of Medicine in Atlanta, GA.

Link to Antiphospholipid Standardization Laboratory

New York Times Sunday Magazine Letter about APS

From the New York Times Sunday Magazine, April 20, 1998, letters:

"Caryn Jame's column, 'Information Please', (Culture Zone, March 29), on the realism of television medical dramas, reminded me of an "E.R." episode. The young Dr. Carter diagnosed an illness that I had had and that my own doctor couldn't identify for nine harrowing months. During much of that time, I was bedridden and my lungs filled with fluid. Every breath was an effort. I almost fell off the couch when Dr. Carter decoded the symptoms --- ANTI-PHOSPHOLIPID ANTIBODIES that make the blood clot and can cause pulmonary embolisms--all before the next commercial break. If only Dr. Carter were on my list of preferred providers!"

The letter was by an H.M. in Salt Lake City, Utah.


DuPont Merck Pharmaceutical Company, the manufacturers of Coumadin (Warfarin)

The is the homepage for DuPont Merck Pharmaceuticals, the manufacturer of Coumadin, (Warfarin), the blood thinner that has been prescribed for me, and may be prescribed for you by your doctor if you are diagnosed with APS, to reduce the chances of blood clotting as a result of APS. There is useful information here concerning Coumadin, as well as other drugs manufactured by DuPont Merck, and information concerning ongoing research.

Link to DuPont Merck Pharmaceuticals

Medic Alert Foundation -- A Very Important Organization

I've been a member of Medic Alert for many years. If you have APS, or other medical conditions, or are taking drugs, or alergic to some drugs, the Medic Alert ID tag, either a bracelet or necklace, is something you SHOULD be wearing. This can save your life. The bracelet or necklace has information concerning your specific condition that hospital or emergency personnel can see immediately.

Link to Medic Alert

Blood - The Journal of the American Society of Hematology

Blood Online (Sponsored by Searle), is the website for the American Society for Hematology. There is a FEE for subscribing to the site, however, without a subscription you do have access to the table of contents and abstracts without having to register. There are articles on APS here in their searchable database.

Link to Blood

NICO (Neuralgia-Inducing Cavitational Osteonecrosis) and APS

A very good friend of mine has NICO and APS. Her web site is an incredible resource and discusses the link between NICO and APS..

What is NICO?

A medical condition exists today that is quite uncommon and is not a well known disease throughout the medical profession. Several years ago, it was conceived in the Dental field however, to this day, it is not well known among dentists and it is a rare event to come across other medical personnel who may be familiar with this The disease that I am referring to is called Neuralgia-Inducing Cavitational Osteonecrosis, other wise known as NICO. It is extremely difficult to diagnose this problem as the pain symptoms can often mimic other syndromes such as Myofascial Pain Disorder (MPD), Temporal Mandibular Joint (TMJ) problems, Chronic Oral Facial Pain, atypical facial neuralgia/pain, trigeminal neuralgia, phantom toothache, or headache. Jaw lesions showed very little radiographic changes as well as few changes of overlying soft tissues that it was designated the "invisible osteomyelitis", however, it has been recorded under various names such as Ratner bone cavity, alveolar cavitational osteopathosis, Roberts bone cavity, trigger point bone cavity, interference field, and NICO.

The pain and suffering those who have NICO go through is incredible. Please visit this valuable resource site to learn more.
Link to NICO and APS Web Site

Heart Attack and Anoxic Brain Injury Information Page

This web page was created by Steve Pearson out of Florida. Steve suffers from APS, has experienced several heart attacks as well as an Anoxic Brain injury due to the lack of oxygen during his heart attack. Lots of good information and links here.

Link to Heart Attack and Anoxic Brain Injury Information Page

Pets and Health

Storm (Azar Storm von Carbon)

Storm, a two year old Doberman, was born 3/9/96 in Morehead City, North Carolina. He's been a part of our family since May, 1996.

Pets can help you reduce the stress in your life. They offer you unconditional love, can help in an excercise program, and add a new dimension to your life. Having a pet as a family member can also help you take your mind off of your troubles, medical or otherwise.


The Arts and Health

fenderdg25s
OnLine Guitar Archive

One of the things I've found about having a life threatening illness like APS is that at times your stress level really gets high. You need a way to relax. For some people reading does it, for others music does it, still others find exercise is their form of relaxation.

I used to be an avid reader, several books and magazines a week was par for the course. My ability to concentrate over the past few months has made it very difficult for me to read as I used to. Others who have contacted me through this web page have also reported this. There are apparent neurological issues with APS.

I have found that my appreciation of music has grown. Music is easier to concentrate on and I've started taking Guitar lessons to help reduce my stress level, (my Fender Acoustic DG25S is pictured above).

Below are some of my favorite internet links to sites that carry all kinds of music and books. I hope you enjoy browsing these sites as much as I do.

(PLEASE NOTE: I enjoy these sites and have shopped online with them. I have no affiliation with any of these sites)
Link to FenderWorld, Fender Guitars
Link to Amazon .com, a GREAT Internet Book Store
Link to CDNOW Great Prices, fast delivery, I highly recommend them.

Questions or Comments regarding this site? Send them to: waxman@mindspring.com