Monday, March 30, 2015

One way to end Charcot Marie Tooth?

One way to end CMT is for people that have it to refrain from having their own dna offspring. I was told in 1980 by a genetics counselor I had a 50/50 chance with each pregnancy to have a child with Charcot-Marie-Tooth. My first reaction at that young age was based on the 2 people that I knew who had it my father whose symptoms were so slight he did not know until I was diagnosed that he had it, and myself. I had corrective foot surgeries in 1977 and 1978 that changed my life - I thought forever! CMT wasn't so bad I thought and medical care just keeps getting better so I ignored the warnings including the concern for my physical ability to handle pregnancy and birth, I just did not equate the two with CMT and possible progression of my disease which did occur with each pregnancy. I rolled the dice so to speak because I wanted children so badly and it never occurred to me that if I did pass on CMT and that it could be worse or progress faster than mine had, I got lucky, 3 kids no CMT.

If there had been access to the Internet at that time I would have had a better understanding of how CMT can affect people differently and it can be so much more severe in childhood than mine was. I may have made a different choice. If I had experienced what I have in the last 10 years from progression earlier in life, I would not have taken more than one chance if even one. I can't imagine my life without my children it was all I ever really wanted to be was a Mom. But I did take the chance and feel very grateful they have all tested negative. My children have had other health problems unrelated to CMT which include epilepsy, endometriosis, IBS, lactose intolerance, poor vision etc.

Now the first baby by way of In-Vito fertilization where they were able to remove the CMT gene before implanting the egg in to the mother has been born. Pretty crazy. A step in the direction of creating healthier less physically challenged generations. Can't imagine it is affordable for the masses but maybe eventually. Unfortunately there are many people who have CMT and just don't know it yet, some are grandparents when they get diagnosed. So a world genetically engineered not to have CMT is a long way off.

Fortunately there is treatment coming which will stop the disease from progressing and in that I find Hope. If treatment could begin with proper diagnosis future CMT patients would potentially live normal lives and possibly never even know how lucky they are to miss out on the symptoms and nagging black cloud of progression hanging over head. Even for myself now, looking at using a scooter, if I could take a medication and know that I would never get worse I would be so happy. The day is coming hang in there CMTers. Have hope!

Lord what news through your guidance I believe, and seemingly a man made miracle taking the CMT out of this child. Help us Lord to not become God in the laboratory and in procreation. Help us also Father to find better ways of diagnosing ilness' and better treatments for them. It has been a long 54 years for me with CMT. I have never known life without it which in a way is it's own kind of blessing. Please give the doctors working with genetics wisdom and help us all to understand the direction things should go. "Lead us not in to temptation but deliver us from evil". I am so grateful to have this forum to speak my truth and what your spirit prompts me to. I need continued wisdom and discernment myself, wanting only to walk in you will. Amen

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