Watermelon Stomach sufferer

[Zigzag]

Hello, I am a sufferer of watermelon stomach (GAVE), it's been ongoing for about 3 years so far and it's very lonely as I have absolutely nobody who knows anything about how I am feeling.

 

Any advice, help, support groups in the U.K. for watermelon stomach?

 

I am also a kidney dialysis patient - which makes this even harder. Would dearly love to have correspondence with fellow sufferers. Please please somebody talk to me 

[Joelf]

Hi Zigzag,

 

Welcome to these forums!

 

I'm sorry to hear that you are suffering with Gastric Antral Vascular Ectasia (GAVE) (Watermelon Stomach) and I've included a link to our medical page to give you some more information.

 

I would suggest that if possible you consult a listed scleroderma expert, as a complex disease such as scleroderma, with unpleasant complications like GAVE, really does require specialist expertise and knowledge to ensure that you receive the correct treatment.  A specialist hospital would also possibly be able to put you in touch with support groups for scleroderma and GAVE.

 

We also have many Patient and Caregivers Stories about other sufferers, which I hope you'll find helpful and interesting.

 

Kind regards,

[Gill]

Hello, I was diagnosed in 2010 with Watermelon Stomach and to date have had 18 argon coagulation treatments, 8 iron infusions and 2 blood transfusions. 

 

I am constantly tired and out of breath due to anaemia which this condition causes. I would be grateful to learn of other people's experiences as I cannot find any support groups for people with this condition local to me in Bedford.

 

Thank you.

[Joelf]

Hi Gill,

 

Welcome to these forums!

 

I'm sorry to hear that you've been suffering with Watermelon Stomach and have had to undergo so many unpleasant procedures.

 

Thankfully, I've not had to deal with Watermelon Stomach (and I'm hoping that pleasure will be indefinitely postponed! ), so can't advise you from my own experience.

 

I've found a couple of old threads which might be of interest to you.

 

Hello, I'm back (Watermelon Stomach)

 

Watermelon Stomach (GAVE)

 

Kind regards,

 

 

[Shelley Ensz]

Hi Gill,

 

Welcome to Sclero Forums. I'm sorry you have Watermelon Stomach. You've come to the right place for it.

 

I just want to mention that this forum is super for helping to find resources for scleroderma and related illnesses in the UK.  But we also have the Main world forum, where you are also entirely welcome to post at any time.  So I'd recommend also jumping in there!  If you want, we can also copy this thread to that forum for you.