does any one have Antiphospholipid syndrome (or antiphospholipid antibody syndrome)?

Question

dose any one know of a group here in texas or near irving, texas or where i can talk to people with it. i found out i have it last year. i am looking for people to talk to about it.

Answer 1

I can't believe it! I'm moving to Irving in only 9 weeks! Yes, I have APS. And yes, there IS a support group out there for you. Unfortunately, it's only on the internet at www.apsfa.org You'll find tons of info there. Here is also a list of docs who specialize / have experience with APS in our area:

Hematology

Charles Deur, MD
801 W. Road to Six Flags Ste 105; Arlington, TX 76012
Phone: [phone]


Sherron R. Helms, MD
8220 Walnut Lane; Dallas, TX 75231
Phone: [phone]


Internal Medicine

Ricardo Alonso Murillo, MD
Dallas, TX 75246
Phone: [phone]

Below is a little about me and my experiences with APS; feel free to read or not to read. Good luck to you, and I hope to see you in the forums sometime! You can also feel free to email me.

I have had it for going on three years now, after having suffered a massive PE in 2004 at the age of 22, and suffered a second only three months later.

I am on Coumadin for life at a high dose.

You should also consider asking to be put on Coumadin if you're not on it already.

Some things really quick about Coumadin:

You need to wear a Medic Alert bracelet stating that you are on this drug and why. See www.medicalert.org They have 24 hour on call assistance if you're every injured.

You need to have your INR tested WEEKLY, and don't let anyone tell you otherwise. My INR levels have gone from a 1.5 to a 5.5 in a matter of days.

Be careful of the greens you eat, as they are a natural blood clotter. The most important thing is to be consistent. If you are a leafy green lover (as I am!) and you want to eat 3-4 servings a day, then you need to eat 3-4 servings EVERYDAY, so that it stays consistent.

Be careful of the meds you take, and ALWAYS ask a doctor or pharmacist before you take a new medicine, because they may interact with the warfarin. Meds you cannot take are: Advil, Ibproufin, Motrin, Excedrin, Aspirin, Alieve, Naproxen, and any other NSAID. Tylenolol is safe.

Take your Coumadin the same time every day, and mark on your calendar your doses so you don't forget.

I have decided to test from home now with my own INR machine, and I simply call my results in to my doc. Check out www.hemosense.com and see if your insurance will pay for one.

You cannot do any kind of activities that may result in an injury such as sled riding, racing, football, ect. as these may cause internal bleeding, and could be potentially fatal.

Pay attention always to signs of clots. Keep a symptom journal, and never be afraid of going to the doctor or ER if you suspect a clot. With very little warning, a clot can take your life.



OK, back to APS! :)

APS is an autoimmune disease primarily known for causing blood clots to form in veins and arteries, that can be fatal. It also causes certain complications of pregnancy (premature miscarriages, unexplained fetal death, or premature birth) and the presence of antiphospholipid antibodies (cardiolipin or lupus anticoagulant antibodies) in the blood.

No one knows why we get it, and it affects only about 2% of the population.


It stinks!

Know too, that APS doesn't just cause clots. It also causes fatigue, arthritic symptoms, vertigo, memory loss, mental confusion, low platelet count, and many other symptoms.

My APS eventually got so severe that I had to quit my job. I still have to work of forgiving my body for being sick. I am so tired anymore, that I can't do the things I did even a few years ago. I had to accept my "new normal". You will have to accept her "new normal" too.

It is a very frightening disease, and you will also need a close support system. Many APS patients see a psychologist or clergy member to talk to. It can be a progressive disease. It is for me, at least. When I got the PE back in 2004, I was put on 5mg daily of Coumadin, a blood thinner. Today, I'm at a whopping 10.5mg. Even on this high dose, I still managed to get a clot in my arm last spring.

Consider joing the online support group I belong to. Check out www.apsfa.org for all sorts of articles that deal with APS. There is also an online support group where you can talk to others who are going through what you are experiencing. And you can always feel free to email me. I know how lonely and scary it can be.

God Bless,
Christina


Hey, I just found this, and thought you might be interested...
It'f from www.apsfa.org

Antiphospholipid Antibody Syndrome (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.

Answer 2

try this site APLSUK : We are a support group for people who have Hughes Syndrome/ Antiphospholipid Syndrome which is an Auto ...
APLSUK: We are a support group for people who have Hughes Syndrome/ Antiphospholipid Syndrome which is an Auto Immune Disorderhealth.groups.yahoo.com/group/APLSUK - 16k - Cached - More from this site