Hello,

I was diagnosed with KD in August this year and naturally being concerned with my future I checked my life insurance/critical illness cover. After all, they sell this stuff on the basis of "What would you do if you couldn't work anymore, how would you continue to pay the mortgage on your house?"

I checked it and I would get a payout if I am diagnosed with MND.

Is Kennedy's an MND?

I tried it. The insurance company wrote to my Neurologist and asked what day was I diagnosed with MND. He put N/A in the date box and added "patient was diagnosed with Kennedy's". On this basis they have declined my claim.

Should I just accept their status on it as it is not MND? I'm confused?

Any advice anyone?

Yes, KD is a MND. If you go to the National Institute of Health (NIH) website and look up KD, the first paragraph states the following:

"Kennedy's disease is an inherited motor neuron disease that affects males."

http://www.ninds.nih.gov/disor...ennedys/kennedys.htm

Thank you Bruce.

Sounds like I could have a battle on my hands in that case. It does appear that my neuro maybe thinks otherwise, which hasn't helped my case.

I'll keep you posted with my progress.

Noelly, sounds to me that your Dr doesn't know what Kennedy's is. We find many doctors do not know of it. You need to print out the list that Bruce sent you too and take it to the same doctor and or another doctor. You need to find one who knows Kennedy's. Check to see if you live near an MDA clinic as their drs will certainly be able to help. Not sure if it will be a fight once you print out that list! Also send it to the insurance co. explaining your dr isn't educated about KD.

Thank Lolo some good advice. Makes me feel a bit more positive about a possible successful outcome.

Here are a few other thoughts:
1. Instead of Kennedy's Disease, use Spinal-bulbar muscular atrophy (SBMA). It is the scientific name. It is also known as X-linked SBMA.

2. From the MDA's website: SBMA is a genetic disorder in which loss of motor neurons — nerve cells in the spinal cord and brainstem — affects the part of the nervous system that controls voluntary muscle movement.

SBMA is sometimes called Kennedy disease, after William Kennedy, the physician who originally described it in 1968. It's also sometimes called bulbospinal muscular atrophy. The adjective bulbar refers to a bulblike structure in the lower part of the brain that contains nerve cells controlling muscles in the face, mouth and throat.
The link to the above is: http://mda.org/disease/spinal-...lar-atrophy/overview

3. Wikipedia: https://en.wikipedia.org/wiki/...bar_muscular_atrophy

4. Journal of Neurology: "Summary - Spinal and bulbar muscular atrophy is an X-linked motor neuron disease caused by a CAG repeat expansion in the androgen receptor gene." Link: http://brain.oxfordjournals.or...ent/132/12/3242.full

5. And, there is numerous references at our KDA website including: "Motor neurons are long nerve cells that extend from your spinal cord to your muscles. These nerve cells fire to make your muscles contract. In KD (Kennedy's Disease) the nerve cells become dysfunctional and eventually die, leaving the muscles unable to contract." http://www.kennedysdisease.org...-is-kennedys-disease

I hope this helps.

Excellent, thank you.

It's frustrating that someone can put "N/A" in the date of diagnosis section and it can totally screw it up. Insurance companies will do anything not to pay out. Today the disease is manageable and I can work but the 12 hour days, five days a week are taking their toll and I'm not sure howlong I can sustain them. The financial worry is starting to affect my much needed sleep!

It was VERY nice for Bruce to supply you all the links!

When the time comes that you must apply for SS, have all your ducks in a row! Keep a good record of all your doctor appointments, dates and why you went. Get copies of Dr notes from every visit. Keep track of all tests, why they were done, what dates and where they were done. All of this will help you filling out the SS info.

Do not hire a lawyer if you can do it yourself online. Yes, it takes a lot of time to fill it out online but at least it is free, not someone stealing away your funds after it gets approved. SS will ask you for all the dates of all your medical visits, Dr names, phones, addresses, hospitals, clinics... everything. If you keep good records in one place you can file a better case and hopefully get in the first time! Good luck and pursue that insurance that YOU paid for!

The insurer needs a date of diagnosis, which it seems your doctor has confused with 'date contracted' (which would be n/a). Ask your doctor for a copy of the lab results and send that to the insurer, it will be dated. They will probably look to see if you had knowledge of or ought to have had knowledge of KD before you bought the policy

you may have to suffer through some event, or have your doctor or employer declare you unfit to work and be placed on short term disability for a defined period of time before your private insurer will process your claim. Most likely your policy is not disease insurance, but income replacement insurance, by declaring an intent to collect on the policy you must now ensure that the policy stays in force throughout the waiting period, the application and adjudication process after you are forced to stop work (voluntarily stopping work for health reasons or moving to a lessor job (and rate of pay) may negatively impact your claim. Do not miss a payment.
I have been collecting on my employers short term disability policy for 6mths, and continue to be billed premiums (50/50 split) so I have mthly amount owing to my employer; their long term disability coverage (also a 50/50 split) premium must still continue to be paid even though I am not working because I will not qualify for it until I have been unemployed (by anyone) for a full year. Most private policy coverage can only top up to a certain amount before the employers policy is clawed back (in my case 70% of straight time pay based on 40hrs/week)
While all the medical record advice here has been spot on, you also need to get a a copy of your signed private insurance contract and understand its terms.
Coping with the disease is hard enough, never mind still working 60 hrs a week (I know, I was myself til September). Take care of yourself, get the facts and forms and process them as they come, always ask for and keep a certified copy of every document; and never go to a meeting if you are emotionally distraught or haven't slept, reschedule and take a controllable friend.
You are in a tough place right now, ... but it does get better

The KDA wrote this Social Security-Disability guide a few years ago and it has helped several people be awarded disability benefits. http://www.kennedysdisease.org...ormation/info-guides

As noted in an above post and in the guide, documentation (excellent records) and having an advocate are important in receiving a favorable response (whether long-term disability or SS-D).

The best advice I ever received was treat the application process as a business transaction. Keep personal feelings to yourself.

If we can help in any other way, please let us know.

Can I thank you all for your support. After composing a letter (with the support of my brother also I should add) containing the links above and insisting that Kennedy's is a MND, the insurance company paid my claim in full.

My advice to anyone going through the same is to stick with it!

Thanks again.

Good to hear. Congratulations.

Bruce, I found even the information on the NIH/NINDS web page to have misleading information. I am referring to http://www.ninds.nih.gov/disor...ennedys/kennedys.htm which says “...Kennedy’s disease is an inherited motor neuron disease that affects males. It is one of a group of disorders called spinal muscular atrophy (SMA).” Both statements are correct in the very broadest sense but misleading. KD is an inherited motor neuron disease. KD affects males. Because it is a rare condition, most doctors (innocently) and all insurance adjustors (less so...)get it wrong. To be clear, SMAs are an autosomal recessive disorder, affecting males and females, epidemiology indicates male: female ratio of aro9und 2:1. SMAs are caused by a defect in the SN1 gene involved in making the SMN protein important for the survival of motor neurons. Insufficient levels of the SMN protein lead to degeneration of the lower motor neurons, producing weakness and wasting of skeletal muscles, more severe in the trunk and proximal leg and arm muscles. SMAs I and II have onset in early childhood while type III has onset between 2 and 17 years of age. KD is an X-linked recessive disorder. Consequently males are symptomatic, whereas females are carriers (although in rare cases females have been found to exhibit some symptoms). KD is a member of a family of trinucleotide repeat (polyglutamine) diseases caused by expansion of the CAG triplet which includes Huntington's and others. In the case of KD, the repeat expansion is very specifically in the Xq11,12 region of the androgen receptor (AR) gene. In the past SBMA sometimes was referred to as X-linked spinal muscular atrophy but this is just misleading. I wrote a letter to NIH/NINDS on this point.

Thanks, Dan, I appreciate you catching this. I sent your comment on to Dr. Fischbeck.

How are you doing?