Sticky Blood-Hughes Syndrome Support
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Thought I would write something positive out of something negative

Hi everyone I'm fairly new to this forum. I've had a really bad few months, as I mentioned before I lost a set of identical twins because of a placenta blood clot at 30 weeks. They discovered i had LA. It was the worst experience of my entire life and I will never truly get over it. I found out a few weeks back I was expecting again but despite Fragmin and aspirin an early scan confirmed the pregnancy had not developed so back to square one. They said it was probably a genetic fault - not down to the condition. Anyway I've been doing a lot of thinking. The consultant has said I've probably had this condition for 10 years (due to funny episode 10 years ago) but I feel physically ok. I exercise a lot, travel and have a full term job. I have lots of energy. The consultant is pretty certain my grandmother had this condition due to her medical history (Graves, blood clot episode and only one tiny baby at full term) yet she lived a full and otherwise healthy life until aged 95. I kept thinking 'should I stop exercising? Should I be ill? Should I stop doing what I normally would just because I 'now know' I have a condition. No! It's made me want to live my life more and be more determined to have a successful pregnancy in future. Believe me I've seen one of the worst possible 'symptoms' of this disease. But life goes on and just because I now know I have a disease will not change my mindset. It effects people in so many different ways. In terms of the history of medicine (that I teach!) I can't wait for this one to unravel!

8 Replies

Yayyyyyyyyyy - what a girl!

I am so sorry about your traumatic journey to get to where you are but what an awesome attitude you have!!! You are doing such a brilliant job and thank you so much for sharing your story.

I hope you keep up the exercise, travel, fun, work and positive attitude. You are a hero.

Much love



Yes I second what is said above - and absolute trooper comes to mind! Please keep us updated! Mary F x


I love your outlook! It's so helpful during a "bad day" to get uplifting update from someone! Awesome!


Brilliant! Echo all of the above. xx


So sorry to hear of the loss of your twins. I think your positive attitude is the key to a good life. Whatever we deal with it helps to focus on and appreciate what's good. My Mum. has almost certainly got this condition too and is 83 .I think I am more effectively treated than she was so I hoping for a good long life too. Sometimes when you have a condition like this you are less likely to take things for granted.All the best Ann


Yes, good attitude. Keep it up.

We all live in the realm of statistics. Because I live Here I have a ***% chance of dying of cancer of the something. Because I have this and such gene I have ***% chance of contracting whatever. This info is valuable in that we can often modify our behavior or take steps to improve our odds. Witness Angelina Jolie.

But statistics are also just numbers. Lots of us get a diagnosis, take an asprin a day and live happily ever after. Others are constantly dealing with that next symptom. Use the statistics and the knowledge that comes from medical research and places like this forum to take a sensible approach. Like, take precautions against DVTs when you travel long distances. Take note if this or that activity or food impacts your health.

I'm about to get in my car and drive into town over an interstate that sees at least one horrid accident a day. Should I look at those statistics and never get in a car again due to what the numbers say about my chances of dying in a car wreck? Should I avoid that interstate after dark, or on foggy or rainy days and take the less used MacCorkle Ave?

No, people under 5'2" will Not make it onto an NBA team. But that doesn't mean they can't pursue other sports.

Glad to see you are persevering. My hopes are with you for a future successful pregnancy.



Great uplifting post just when I was feeling down thank you and all the very best of luck.


I totally agree with what you say ;-) it is a struggle at times but i will keep fighting & live as long a life as possible because i so love my life, family friends and dog ;) my pleasures come from the free things from life - living in the UK with all the seasons and walking in the countryside watching the changes all seasons bring!!

I think having APS / life long condition makes us stronger, appreciate what we have and means we are SURVIVORS! I wish you well and please keep us updated as i am sure you will have a bouncy baby in your life very soon kathy xxxx


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