Recent Health Information

In 2012 I finally received a diagnosis for my condition.

It is a single letter mutation in the PIK3CA gene.

This has caused the overgrowth in my legs & foot.

I was the first person in the world to be discovered with this particular gene mutation, something that I am very proud to say.

All this was down to two amazing doctors who took the time to research my condition.

Subsequently they were able to offer me treatment in the form of a tablet that has amazingly started to shrink the fatty tissue in my legs & foot.

Since I started treatment in 2012 I had lost around 5 stone, this is mainly from my effected areas of my legs & foot, plus no side effects of any significance which is always a bonus.

 

LATEST NEWS

I noticed in early 2018 that my weight had become static & I was slowly in the following months starting to put a little weight back on again.

I also had recurring pressure sores which meant that I had to stop taking the Rapamycin, as my immune system was being effected so any wounds would not heal.

Once healed the big question was, do I start up the Rapamycin again at a higher dose & increase the risk of further sores. Or do I look for an alternative? Or not take anything & let me body become used to the lack of Rapamycin & then try it again once I had a break.

It is now mid 2019 & I was hoping to take part in a drug trial, but sadly that has fallen through. So now I am looking at possibly going back on the Rapamycin as my weight is increasing.