Even amongst health professionals, awareness of CMN is low because it is a rare condition, so our first challenge as parents was to find information about the condition and what treatments were available. Fortunately, we discovered the Caring Matters Now website and were directed to the centre of expertise at Great Ormond Street Hospital led by Dr. David Atherton. It was a great relief to hear accurate information about CMN rather than vague and disturbing stories about possible complications and he gave us well-balanced information about treatment options. During her first two years, our daughter had several operations to remove “satellites” via surgery, all of which were successful thanks to the skills and dedication of the team at the hospital.
The treatment of larger CMNs is more of a problem, with some past treatments such as dermabrasion now avoided and newer treatments such as the use of lasers having potential side-effects. At the moment, there is no obvious treatment available for many large CMNs. The research currently being undertaken by Dr. Veronica Kinsler at Gt. Ormond St. offers real hope to patients and families that the causes of the condition will be better-understood and that new treatments will be discovered.
The members of Caring Matters Now, led by Jodi Unsworth, are the main fundraisers for the research. Being a keen cyclist, I’ve completed a few fundraising events for CMN over the years, but this year is the big one – Land’s End to John O’Groats, or 940 miles over 9 days. My target is £4,000, which will be a good start towards the £30,000 we need to raise this year.
I’m setting-off from Land’s End on Saturday 17th May, so not long to go. Please can you give generously to allow the research to continue and to remind me that it’s all in a good cause after a few days in the saddle!
Thank you, Colin.