Gwyneth's Story

Telangiectasia - or the T in CREST - sound harmless enough. If I get those pesky little broken veins I will just cover them with makeup. 

Well no, not if they are in your stomach and bleeding.

It was at a routine lung function test that the physiologist first noticed that my haemoglobin levels were low. She did a quick finger prick test and looked alarmed, so asked a colleague to repeat the test. They then sent me for a full blood count and I went home. 

That afternoon I had three phone calls: one from my rheumatologist who had arranged the lung function test, one from the person who had conducted the test and one from my GP. They all asked me to go to see my GP immediately. 

An hour later I was in the Ambulatory Emergency Centre (AEC) of our local hospital, having blood transfusions as my Hb was 54 (ideally it should be 120). 

A huge number of tests later, and the endoscope showed that telangiectasia in my stomach were bleeding and needed to be cauterised.

Happy that they had found and treated the cause, I thanked the doctor and hopped off the bed, only to hear him say: "We'll see you again in 8 weeks".

And so it continues. My Hb plummets, I book another endoscopy and all is well for a few weeks.

There's something I hadn't planned for!

I feel lucky though that I have limited systemic sclerosis. I take hydroxychloroquine which has reduced the pain levels. I also have a few other autoimmune conditions and a genetic one (Ehlers Danlos) so my symptoms are confusing.

... And then there are those memory problems!