What percentage of people who have Antiphospholipid Antibody Syndrome (aka Hughe's Syndrome) do NOT have Lupus?

By whatsnext March 25, 2011 - 4:37pm

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I see information on EmpowHer about APLS only as it relates to Lupus. However, I've was diagnosed with, and have been treated for APLS for more than 10 years and I don't have Lupus. Neither does my hematologist, who is probably the only practicing physician with APLS.
I take high-dose Coumadin and have been relatively symptom-free, with occasional flares of inflammation, for the past 10 years. We keep my INR between 3 and 3.5 and I pretty much feel absolutely fine: no bruising, no bleeds, etc.
I am curious to know what percentage of APLS patients I fall in.
Thank you,

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whatsnext

Hi - thanks for your response. I wanted to get a conversation started here about APLS *without* lupus so people would know that the two don't necessarily go together.

I owe the fact that I'm alive to the wonderful people with APLS all over the world who shared information with me via the Internet when I finally got my diagnosis and doctors were totally clueless.

I am absolutely convinced that Serena Williams has APLS because she presented in exactly the same way I did: DVT, hematoma and PE. Considering that she is African-American, it also is likely that she has Lupus, from what I've read. I believe Jesse Ventura, who retired from public life after repeated PEs, has APLS too.

I wish they would come forward and become spokespersons for the disease, which is under-diagnosed and poorly treated.

March 25, 2011 - 9:48pm

Empowered

Maryann Gromisch RN Guide

Hi,
According to the website for APS Foundation of America, Inc.:
40-50% of patients with lupus also have APS
So, you fall into the 50-60% of people with APS who do not have lupus.

March 25, 2011 - 5:48pm