Charcot-Marie-Tooth UK
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Information requested ?

Hello to all my fellow C.M.T. sufferers: I have inherited (from father) CMT type 1a since my birth (1945), although I did not know that: Finally at the age of 53 years due to further medical advances I was seen by a neurologist who new of this disease: I now have to wear "toe to knee" splints to support my wasted lower limbs: I have two questions to ask:

1) Do I, or other sufferers require to inform the D.V.L.A. that I have C.M.T. Type 1a ?

2) Do I, or other sufferers require to declare this condition, when applying for Travel Insurance,

is it classed as a "pre-existing, notifiable condition" ?

Best regards to all .... John (Glasgow)

10 Replies

Hi John is was born in 1945, and suffer the same condition but was not aware of either of my parents having it. Yes you do have to inform DVLA but their stance is that if your insurance company will cover you (you also have to inform them) then it is not a problem, you also have to tell any travel insurance, but I have found that they only load the price by £10 to £20 so it is worth it to know you are covered.


Hi John. As Cleo says, you must declare the condition to the DVLA, they can fine you £1000 if you don't. The good thing is that they seem pretty relaxed about it. You will probably be put on a temporary licence until they have contacted your GP or neurologist, then more than likely you will get a three year rolling licence, which you don't have to pay for like people on 10 year ones do! I was very worried about informing the DVLA, because I need my car for work, but it was all very much a storm in a tea cup in the end. I'm no longer allowed to drive a 12 seater bus or heavy goods vehicle but, hey-ho, I never did anyway! I've found that motor insuance companies are also pretty easy on the subject, their view being that if the DVLA say you're OK to drive, then there's no problem. I have also never had a problem with travel insurance. Advancing age seems to have more bearing on travel insurance prices than CMT.


Hello to Cleo,and HorshamMalc .....

Many thanks for taking the time to reply to my 2No. questions: I suspected that "Travel Insurance" premiums would be "loaded" in I declared my Cmt Type 1a:

I am more concerned about the DVLA's attitude ! As I approach 70 years, I will be required anyway to accept a new driving renewable licence following a medical review:

My Neurologist once told me following my diagnosis, that "you are not on a slippy downwards slope " rather than think of a set of stairs - you slowly go down one at a time - stop - adjust & manage the change - ready for your next step down ! Good luck everbody - John (Glasgow)


Thank you for bringing this up, l was diagnosed a few years ago, l dont drive even though ive had a licence for 20 years didnt realise l had to inform the DVLA am now concerned l will be fined. l havent driven for years but am named on my husbands insurance. Travel insurance no problem got mine for £22, but have since had a suspected angina attack, am travelling next week, if l declare it will be £275. I n a bit of a dilema. xx


Hello Lowther 1 .....

Approx 4No. weeks ago, during my daily 3/5Km walk to keep my 'floppy' lower limbs muscles active, I too suffered an ANGINA attack (although it was not known to me )?

Went next day to see my GP, blood tests done ! Next day Cardiology Clinic called me to attend for further investigations ? 1st ECG was clear, failed 'Treadmill Test' - as ECG reading had now changed to bad: Sent for echo-scan due to my CMT 1a condition, heart muscle OK, not damaged !

Next day received Angiogram, X-ray of my heart - it showed up 2No. blocked arteries, a few days later was admitted as a 'day-surgery' patient for Angioplasty - the painless insertion of 2No. 'drug-eluding stents to open narrowed arteries - sent home eight hours later !

Quizzed consultant - why can I have 'plaque' blocking my arteries ? as I have been taking "statins" since 2004: Answer - Probably this is due to your TYPE 2 diabetes:

Attention all CMT sufferers ! Please be on your guard - Do not sit back, and accept the doctors 1st diagnosis/guess YOU KNOW YOUR OWN BODY BEST - DO NOT ACCEPT ! BUT INSIST ON FURTHER MEDICAL INVESTIGATIONS ? ? ?


I was diagnosed with CMT a little over 20 years ago and I think first informed our licensing authority (I don't live in the UK) about ten years ago – hadn't realised I needed to before, but if you don't, and have an accident, it could invalidate your car insurance. They do seem pretty relaxed about it, but ask you to tell them know if your condition worsens to the extent that it might affect your driving. I wouldn't worry – some very, very disabled people are driving perfectly well. As far as travel insurance is concerned, I always declare my CMT. Yes, you do pay extra, but if you had a bad fall abroad which they could attribute to CMT, and needed medical repatriation, you would be in very serious financial trouble indeed. It's not worth risking it!


Yes cmt cheap to declare on holiday insurance, and as l dont drive so not at risk of accident, hopefully dvla will understand that l didnt realise, my problem is the recent suspected angina attack, also do not have more of 50% lung capacity in left lung because of frozen diaphragm so flying a real issue, which is booked for sept 1st, dont want to cancel but insurance horrendous if i declare it in a bit of a dilemma which isnt helping my BP. Dont mean to moan we all have our crosses to bare, but good to have feed back from people who understand, those who have no idea how we feel just say "oh you'll be okay".


Hello Lowther 1 ....

This totally debilitating CMT Disease (yes it's a DISEASE always call it that), it effects so many sufferers in so many different ways ! Through these information sharing forums I have now learned that CMT can cause problems with your diaphragm !

You know your own body best - You will cope OK! - So get yourself off on holiday: Ask your doctor for a Glyceryl Trinitrate Spray, before you "take-off" two puffs below your tongue will relieve any chest pain by opening up your arteries ! Also take 75mg dispersible aspirin daily: Angina itself is not an illness ? it is a symptom of not enough oxygen carrying blood getting through to supply you heart!

Best of luck to you ! Remember the ending in the Carousel musical ? "When you walk through a storm keep your head up high" ! ! ! As you "WILL NEVER WALK ALONE" John (Glasgow)


Thank you John that was nice.


Hi John

Yes you do need to inform DVLA, I did, took ages, was eventually called for a driving assessment, which unfortunately at the end after driving an hour to the test centre, an hour driving with the examiner and then at the test centre, I was told that they would have to revoke my license as I had failed the final emergency stop. This was because I couldn't feel if my foot was on the pedal correctly. It took six months for me to get my licence back, after they made further enquiries on my health, I had to chase them to find all I had to do was have another assessment with hand controls, spend £350 on 10hrs driving tuition with controls and modify my automatic car £550 ( got help with this through Wheels to Work so only paid £175) Money very well spent. As you said another step down the steps but I've still got my independance.

Good luck


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