Sticky Blood-Hughes Syndrome Support
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APS and Lupus Genetic link?


I have APS, MS. Pernicious Anaemia.

My Uncle who died aged 50 about 20 years ago had recurrent blood clots in his leg from age 30, the first resulting in the amputation of his toe after dropping something on it causing gangrine. Anyway, he had progressive amputations until his leg was removed at the hip.

So, I believe he must have had APS. I have just learned that he died from multiple organ failure. There were no clear reasons why - the Dr's put it everything down to the fact that he was a smoker...

I am now assuming he must have had undiagnosed Lupus.

Of course, I am making assumptions and guess work, but it seems the most likely thing to me. And, if I have lupus "like syndrome" can that progress into Lupus? And what actually is Lupus "Like" syndrome?

I was only diagnosed with APS etc. maybe two, three months ago, symptoms began one year ago, and in that time I have had a stroke, arterial clots in my leg requiring major surgery and PE's.

Maybe it's too early to tell my prognosis?

Thank you for any replies; of course I will let my Dr at Tommy's know this, but I won't be seeing her for about a month.

Annie xxx

8 Replies

These patterns do seem to run in some families and often a whole spectrum of autoimmune diseases. My late father would have had APS and probably Lupus also....and his own father. I do, my daughter does, have the two, my son is suspected of one or the other probably hughes, and both my sisters, have had blood clots. Hope you get some answers soon. Mary F x


Mary, I am so sorry that your children have this, it just adds to the hurt I am sure. I really feel for you, because I have daughters. I'm afraid for them

Annie xxx


Do I put my children through being tested for antibodies? I couldn't bear it if they tested positive... I don't want them to grow up with this hanging over them; neither do I want them at risk by not being tested.

This, to me, is the worst thing that could ever happen, for them to have inherited bad genes.

My girls are 11, 14 and 17.

My dad has Pemphigus mucus membrane, an auto immune disease which affects, for him only the inside of his mouth. It is where the skin layers separate and blister.


My personal opinion is to keep an open mind, in most cases there is not a problem. I only put my children into tests as they were clearly ill, in my daughter's case very ill, my son is not well but the jury is still out although it is suspected, due to the constant and serious nature of his daily migraine.

I think, if you possibly can keep an open mind and a positive mind set... as I live life to the full and try to keep any worries out of the way, it would be detrimental to you and them if you are in a constant state of fretting about them, I do of course understand...So.. unless something shows up, which makes you suspicious, then assume they are ok. For instance my sisters had flaring APS during pregnancy... and not since then... and their children are fine! Mary F x


Personally I would only test if they were becoming symptomatic or in the case of girls becoming pregnant if they had to have informed choice and it was a condition where testing was important for that.

I am going through genetic testing myself at the moment and just waiting for the results, I'm terrified of what I may have to say to my children if they are positive so I know how you feel especially as my daughter already as two children.


Thank you Mary,

Sensible as ever - this is my instinct too, although my 14yr old does suffer from migraines, as did I at her age.

But my girls do not need to go into their lives with the burdon of thinking their opportunities might be affected - they need to know they have the whole world to explore.

Annie xxx


I'm sorry to hear about your Uncle dying of multiple organ failure, that sounds suspiciously like CAPS - Catastrophic Anti Phospholipid Syndrome. That's rare but has been known to happen without warning. My grandfather died of an unspecified illness in Hospital, West Africa when I was about 6 years old. Nobody ever did confirm exactly what killed him, possibly because APS simply wasn't known about back in the day. Similarly, his organs just failed and he was gone. Perhaps APS has jumped a generation. My parents never had it.


A lady doctor at my GP practice shocked me a few weeks ago by telling me that my APS had not been caused by anything but was a genetic condition. I am 59 and only started with autoimmune problems in my 50's after I had a bladder repair operation (TVT) and after my body rejected a Mirena coil. I have 5 healthy children in their 20s and 30s and don’t want them to inherit any ill health from me. My daughters have had blood tests because they were using the contraceptive pill. but the tests were negative. They are both using the i.u.d. now anyway. I have done my family history and there is no significant history of autoimmune disease. My mother’s sister has suffered from rheumatoid arthritis since her 60’s and had an overactive thyroid in her 40’s but she is 90 now so she hasn’t done badly!


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