I have been living all of my life with CMT. This is my own conclusion which was recently confirmed by Donald Priest, the prosthetist and BOC orthotist who I have been seeing.
I am a retired registered nurse with a long history of mental health nursing. Although I have been treated since infancy by a variety of doctors and specialist including Children's Mercy Hospital in Kansas City, Mo., my condition remained undiagnosed until age forty following the diagnosis of my father by DR. Arthur Allen, neurologist of Kansas City after which my two younger sisters and I were also diagnosed.
My interest in your organization is spurred by that and by the fact that most of the doctors I have met before and since my diagnosis have no idea what CMT is. Also my children and their children as well as my great granddaughter, who is now 3 yrs old also show varying degrees of CMT (some of which are with marked symptomatology since early childhood)and were also treated in infancy at Children's Mercy in KCMO.
My children's pediatrician, Dr. David Eubanks, once told me, "Carolyn, all of your kids have floppy joints". He was their pediatrician at the time of my father's DX and was one of the only doctors I have seen since who knew what CMT was. I continue to have much respect for the late DR. David Eubanks, but he did not associate their symptoms with CMT. He referred my middle son(who is now 54 years old and remains undiagnosed & without insurance)to an orthopedic specialist who thought Rick had early childhood juvenile rheumatoid arthritis. Our pediatrician disagreed and treated him with bed rest and traction to his affected leg with only limited weight bearing for a period of three months.
In retrospect, I now recognize and believe that some of my own treatment in the past has exacerbated my CMT even though it represented the best known medical at the time.
My sister and I used to attend the CMTA support group in the Kansas City area when there were meetings here and several of their meetings were conducted by DR. Richard J. Barohn,M.D. of KUMC Department of Neurology where I learned much of what I know about CMT.
During some of the CMTA meetings I met a young mother and her child who had also been treated by Children's Mercy here and followed there most of her life. At that time she was wheelchair bound. Unfortunately, there are no longer meetings in this area. I do, however follow CMTA online from time to time and have submitted questions and received answers from some of the staff.
As a retired nurse I am concerned about the lack of knowledge of CMT by the general public and most profoundly concerned by the lack of knowledge of CMT in the medical community. I believe that there are many cases of CMT that remain undiagnosed and who are therefore are receiving treatment, medications etc. that may be exacerbating their conditions. Most of the medical professional community I have met have no knowledge of CMT. The medical professionals with the most knowledge seem to be the podiatrists.
I now wear a left double upright ankle foot orthosis and a right single upright ankle foot orthosis and core-spun compression hosiery . I want to do my part in educating the medical profession and general public about CMT!
Today I went to the CMTA website with the intent of purchasing a CMT tee shirt when I saw your name and information.
I am a firm believer that weight bearing exercise is my one best ally for maintaining independent living and the greatest quality of life. I received a phone call yesterday telling me that my most recent bone density exam was "completely normal". I attribute this to weight bearing exercise and careful attention to maintaining a healthy diet. One of Dr. Priest's goals for me is to be out in the park again walking with my little Yorkshire terrier "Kasey".On his website "Donnie" Priest of HOPE Horizon Orthotic & Prosthetic Experience states his hope that the answer to the question "what will I be able to do? will become "more than ever before". Over the years I have learned to adapt to the progression of my disease . Now at age 76, after having my second brace only about a week, I am already able to do things that I have been unable to do without falling for several years and I am able to answer that question along with "Donnie "more than ever before!"
One of my goals for myself is to do my part in educating the medical profession and general public about CMT! Since I believe in weight bearing exercise I will wear my braces proudly along with my CMTA tee- shirt and take that opportunity to educate about CMT.