Gorlin's Syndrome and hypogammglobulienemia
I'm 54yrs old, diagnosed in my teens w/Gorlin's Syndrome. Having a rare disease is very challenging, educating my specialists along the way. Anyone with Gorlin's Syndrome also have hypogammaglobulienemia, an immunodefiency?
Hello LF62, From the delay in getting a reply, you may gather that this Health Unlocked site is rarely visited. I keep an eye on it from time to time and try to help with directions when possible. Having no medical knowledge I can't say anything relating to your immunodefiency. The best I can offer is to refer you to this link
"To see all the latest and discuss topics relating to Gorlin Syndrome visit the Gorlin Syndrome Support Group on Facebook. facebook.com/groups/1272325..."
The U. K. Gorlin Support Group webpage can be found at gorlingroup.org/.
If you put out a call on Facebook, be sure to say what country you are in as this has a big effect on the responses. Hope this helps.
Hi Vitruvius...Thank you for reply. I had checked the Gorlingroup.org...it is not a very active site. Last updated 2013.
people affected by Gorlin Syndrome and made many friends along the way, all have been an inspiration...
a progression in the disease. Does anyone have any information on how Gorlins progresses throughout
Hi, unsure if I have Gorlin's syndrome because I haven't been tested but I've had over 40 BCC's removed...
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