Not had great weightloss since gastric sleeve due to rare gene deformity

[Lynwason 0]

I started with a gastric band, a year after this operation I was diagnosed with a very rare gene deformity, when diagnosed I was the first person in my country,UK, and the second in the world. My family were tested and we all became the first family in the world, my mother is the carrier my older sister has it, her son and myself. My father and grandmother were tested but both were negative, my mothers two brothers were tested and were also negative, my grandfather had died before I was diagnosed. I was only diagnosed because a doctor, I had been called a liar by meny doctors previous to this, looked at me and my mum and said " you don't eat much do you, let's start from their." He said that due to my weight distribution, from waist to mid calf, it must have a genetic component and just because they had not yet found it it did not mean it was not there. He sent my blood to Cambridge, 6 years later I had a phone call saying that they had found the gene deformity.

I had my gastric band for a year before this, not sure if they would have given me one with the diagnosis,

[Juhygtfrdsd 154]

What is the gene? you never mentioned what it is or why it would cause you not to lose weight.Are you venting or asking for help?

[Lynwason 0]

Sorry my iPad gave up. At the moment it is called Leptin Receptor Defiency, I say moment as it has not been given a proper name as it is so rare. It means I can store fat really well, but can't get it out of the fat cells to use for energy, exercise for me is useless. I live in permanent starvation mode, I'm always hunger, it feels like I have a voice in my head saying eat now or you will die. Before my gastric band as I said I did not know what it meant to be full, I could eat till I felt stuffed, but 20 mins later I could eat again. After banding I am now aware of what full means, but with the band if I ate too much I could get rid of it. With the sleeve I can't.

There is an element of ranting but only because I have no one to talk to with my symptoms, as I said my elder sister has it to the extent I have. There has to be more people in the world with this disorder, but getting doctors to believe you and send your blood for testing is difficult. I have tried most things in dieting, had my jaws wired together to prove to one doctor that if I lose weight it will not be from my lower half, I was right.

Also I tried liposuction twice but all they could get was 2.2lbs each time, they then discovered that I have muscle fibre running through my fat which is what stopped the liposuction. I have had fat removed from my thighs, hips and bat wings. I found a great plastic surgeon who asked me what would change my life, I said my hips and arms which he did, really difficult for him as there was no one with my condition that had had surgery, a trend setter.

The surgery was not without problems but I am now healed and feeling a lot more at ease with myself. But I now have to wear compression garments on both legs and arms as my lymphatic system is crap. If there is someone out there with my rare condition I would really like to contact them also to help other people who may now feel that they have my condition.