Cystic Angiomatosis

By Will Mcgookin, Cystic Angiomatosis, United Kingdom, October 4, 2017

Hi I’m now 45 and have this rare disease a lot of investigations and operations in the previous years, Cystic Angiomatosis all over my skeleton these are Tumor like cysts on the bone with agonising pain, I was medically discharged from HM forces in 2000 through this, to the day I’m not aware of any more people in the uk with it. But would love to know if there is for discussions, I’ve had radiotherapy but no ease on the pain this is controlled by opiates
Thank you for reading
Will

Share this

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.

Stories Of The Week

Ellie Rose, syndrome de  kleefstra, microdélétion 9q34

Ellie Rose, syndrome de kleefstra, microdélétion 9q34

Emilie, Kleefstra syndrome, France, July 11, 2017

Ellie Rose est née le 28 mars 2012. Elle est née après terme,. Elle était toute molle, dormait tout le temps et mangeait peu. Elle a été nourrie pendant 6 semaines par sonde nano-gastrique et des exam...

X

Share your story




(To find the english name and more information about your disease, click here)