Zigzag Posted July 26, 2017 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 Share this post Link to post Share on other sites
Joelf Posted July 26, 2017 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, Jo Frowde ISN Board Member ISN Assistant Webmaster SD World Webmaster ISN Sclero Forums Manager ISN News Manager ISN Hotline Support Specialist International Scleroderma Network (ISN) Share this post Link to post Share on other sites
Gill Posted June 10 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. Share this post Link to post Share on other sites
Joelf Posted June 10 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, Jo Frowde ISN Board Member ISN Assistant Webmaster SD World Webmaster ISN Sclero Forums Manager ISN News Manager ISN Hotline Support Specialist International Scleroderma Network (ISN) Share this post Link to post Share on other sites
