I am currently waiting to be tested for this disease, as I’m am very unwell and have been for the past 2 years I lost my dad who died 2 years ago at the age of 55, my auntie who was 52 and my nana who died at the age of 32 due to vhl I am just curious if any of my symptoms are familiar with anyone else that has and is suffering from vhl, I have had many visits to my gp and a&e and only now I am starting to get some where, my gp just kept saying it was ibs and gallstones but I have been for an ultrasound and they discovered that my gallbladder isn’t actually visible as if there’s something covering it, the last 2 years my stomach has got larger my nurse actually thought I was pregnant it has effected my study’s at college as I am studying massage therapy and using electrical equipment and my tutor wouldn’t let me receive any of the treatments until she had a written note from my doctor saying that I was not pregnant. I am constantly vomiting and struggle to do a lot of excercise as it causes me to get very faint and vomit, some days I don’t get much pain but other days I am in agony with the pain when I get a lot of pain I could probably fill a bucket full of sweat as I get really hot, I just think if I knew someone understands how I am feeling then maybe I’d feel like I’m not the only one, I hate being ill like I am because I am only 17 years old and it’s awful when I see friends going out and doing nice things and I try and avoid doing these things out of embarrassment.

I am currently waiting to be tested for this disease, as I’m am very unwell and have been for the past 2 years I lost my dad who died 2 years ago at the age of 55, my auntie who was 52 and my nana who died at the age of 32 due to vhl I am just curious if any of my symptoms are familiar with anyone else that has and is suffering from vhl, I have had many visits to my gp and a&e and only now I am starting to get some where, my gp just kept saying it was ibs and gallstones but I have been for an ultrasound and they discovered that my gallbladder isn’t actually visible as if there’s something covering it, the last 2 years my stomach has got larger my nurse actually thought I was pregnant it has effected my study’s at college as I am studying massage therapy and using electrical equipment and my tutor wouldn’t let me receive any of the treatments until she had a written note from my doctor saying that I was not pregnant. I am constantly vomiting and struggle to do a lot of excercise as it causes me to get very faint and vomit, some days I don’t get much pain but other days I am in agony with the pain when I get a lot of pain I could probably fill a bucket full of sweat as I get really hot, I just think if I knew someone understands how I am feeling then maybe I’d feel like I’m not the only one, I hate being ill like I am because I am only 17 years old and it’s awful when I see friends going out and doing nice things and I try and avoid doing these things out of embarrassment.