“If we could get people talking about CMT during the Awareness Month and beyond, that would be amazing,” said Simon Bull, CMT UK’s CEO. “Even if we can help just 100 more people to be diagnosed with the condition, it would really help them to manage their symptoms. It would also mean that we could provide support to those already living with CMT but didn’t know about our charity.”
By raising awareness of the progressive disease among health professionals, he added, patients could be diagnosed sooner and have quicker access to treatment and support. Diagnosis is usually centered around comprehensive medical histories and physical examinations. Lack of a family history does not rule out CMT, but might prompt a specialist to investigate diabetes, overexposure to certain medications, and other prospective causes.
The onset of CMT symptoms may differ between patients, even among relatives with the same condition. Among the several different types of CMT, common symptoms include lower limb weakness, high foot arches, curled toes, walking and running difficulties, and decreased sensation in the legs and feet.
Patients may contact the organization to get more information or request support. CMT UK is also offering healthcare professionals a free package with evidence-based information about the condition, as well as details on future professional conferences.
“Most of CMT UK’s trustees are living with CMT, so they know first-hand the type of support that is needed for our members,” Bull said. “For a small charity, it’s really active with lots of information available about the condition, managing it, and living well.”
Part of the European CMT Federation, CMT UK supports patients and caregivers, promotes research, and educates the public about the disease. The organization hosts annual conferences, supports a special group for young patients, and has regular membership meetings organized by regional support groups. Of course, it also must raise funds.
“Without all the very generous donations we receive, we would not be able to support all our members and health professionals, so any donation of any size is gratefully appreciated,” Bull said. Visit this page to make a contribution.