Healthy, 32 yo, CMT'er denied Long Term Care Insurance b/c of CMT

[Guest guest]

Greetings:

I am 32 years old and have CMT Type 2 with relatively mild

symptoms thusfar. I have a cavus foot w/ high arches, hammer toes,

mild tremors in my hands and occasional foot drop. The most

troublesome symptoms to me now are very bad standing balance, cold

extremities and difficulty finding shoes that fit. Other than my

CMT, I am healthy. In fact, due to some lifestyle changes, I

actually think my CMT has improved over the past year or so (will

explain later). I wear in shoe orthotics. I used to wear AFO's on

occasion but found that my orthotics work better and keep areas not

affected by the CMT from atrophying or weakening - this was happening

when I used the AFO's.

I am a Clinical Social Worker for the Veterans

Administration. Last year, federal employers offered a new Long Term

Care Insurance program. I wished to enroll, not just b/c of my CMT

but b/c of awareness of the high cost of care, my age and the wanting

to be proactive in the event of a future accident or more serious

health problem. The plan stated that they may deny applications for

people with certain pre-existing conditions including Muscular

Dystrophy, Parkinson's and HIV. Since CMT is an atrophy, not a

dystrophy, and I am mildly affected at this point, I figured I'd be

eligible.

I received a letter yesterday denying my Long Term Care

application because of my diagnosis of CMT. Since there is such a

huge variation in the expression and severity of CMT, I felt this

reasoning was not sound medically. The letter said that I can have

doctors write w/i four months to contradict the denial if

appropriate. I will consult my Neurologist and PCP, however, neither

could deny my diagnosis of CMT itself, and that appears to be their

rationale.

I work full-time, do volunteer work and exercise 4-6 days a

week about an hour a day. My exercise includes walking a treadmill,

stationary bike, eliptical machine (great for CMT as NO impact and

feet have pedals under them at all times) and rower. I also

occasionally participate in a class that is a combination of pilates,

yoga and tai chi I swim, bicycle and downhill ski. I take

Vitamin E, Glucosamine/Chondrointon, Vitamin B12, and folic acid

daily and have intermittently seen an energy healer in the past

year. Since I started the healing, vitamins and exercise I have seen

marked improvement in my CMT: I can walk faster and longer w/o

tiring, my feet drop less, my balance is a bit better, my energy and

attitude are better.

I have no other health issues except congenital cataracts which

has been treated with intraocular implants and surgery and is no lMy

70 yr. old mother and 74 yr. old father got a long term care plan

within the past year from one of the same providers. They both have

Type 2 diabetes, my mother has hypertension and also had a knee

replacement. They pay A LOT for this policy, but they were

accepted. I have none of these issues and was denied.

I am wondering if any fellow CMT'ers have any ideas about how

to appeal this or who may provide me with long-term care insurance?

I'd also be interested in hearing if anyone else has had such an

experience?

Peace, Marti