James, our 6 year old grandson, has Gorlin Syndrome, a rare condition in which people can develop skin cancer, skin cysts, cysts on the jaw, changes in the bones which may be longer and larger than usual and pits on the palms of the hands and soles of the feet.
In addition multiple basal cell carcinoma (bccs) are a common symptom, as in James' case. Patients often require many hundreds of them treating over a lifetime.
It is a lifelong condition without cure and although not life threatening the condition can be life changing with patients experience reoccurring symptoms throughout their life.
Like most people, we had never heard of Gorlin Syndrome, so turned to the Gorlin Syndrome Group.
Gorlin syndrome is a very rare condition so the group work with the medical profession both on new cures and treatments and also on best practice treatments for this little known condition. The additional aim of the group is to support patients and families with information and guidance.
When I first retired from a lifetime in food retail management, I decided to spend as much time outdoors as I could. I retrained in tree surgery and the management of invasive species, and spent a couple of happy years lopping and generally tending to trees, shrubs and lawns. After using all my nine lives, I reluctantly gave up tree surgery, but still love spending time doing any gardening or lopping (that doesn’t involve a climb) in the Stockport area.
Instead of payment for my work, I welcome a donation to the Gorlin Syndrome Group.
More about the Gorlin Syndrome Group (www.gorlingroup.org)
(Registered Charity Number 1096361)
As a small charitable organisation with Trustees who give up their time voluntarily, we are reliant on donations, sponsorship and regular givers to ensure our continuing work. Supporting individuals, their families and carers affected by Gorlin Syndrome is what we do. We also aspire to raising awareness of the condition and promoting research into the many symptoms associated with Gorlin Syndrome.
Every year the Gorlin Syndrome Group touches the lives of many newly diagnosed individuals and are in contact with them and worried parents looking for information about the condition and signposts to appropriate care for their children. Additionally, we work with Medical Advisers and Researchers to promote new advances in treatment.
For information the above photograph shows a part of Cheadle Green shortly after I mowed the grass in late August 2018