A.L D - Affection Longue Durée. - Hemochromatosis

I thought I would start a thread here that is relevant to the group:

Long term illness is, in itself a disability, and has a far reaching effect on an individual's every day life.

There is a "list " of these in France which can be found here, and can be translated into English on the site.

The main importance of this pre-defined list is that your individual "caisse" will bear the cost of treatment at 100%. Your complimentary insurance remains unaffected.

It is important to note that other illnesses NOT linked to the ALD will be funded in the usual way - ie split between the caisse and complimentaire insurances. If for example you are diabetic and you break your leg, it is treated as unconnected to your primary illness.

Your GP will organise the declaration of the ALD, and you will be prescribed from that point on and "ordonnance bi-zone" - basically a prescription split into two "zones" - one for meds related to your ALD and the other for meds that are not.

This is a very brief explanation of quite a complex system, but the site also gives EXACT guide-lines for the treatment you are entitled to expect for your long term ilness - this too can be translated into English

I was diagnosed two years ago with a rare genetic disease called HEMOCHROMATOSIS, and I found this site to be invaluable when I was looking for answers to lots of my questions.

I hope this will be of help to anyone who may be suffering from any long term illnesses - it may provide you with the answers to many of your questions.

here is a slightly more inclusive list, though not in English

Thanks for posting this, I had no idea about it despite having been through the process of registering a request to have recognition of a disability. (reconnaissance d'une qualitèe handicappè) This was done via myMaison Departmentale des Personnes Handicappèes- MDPH.

It takes 3 months to get a response so my advice for anyone becoming handicapped, is to ask for help ASAP and don't stint on the detail about the condition/s you are suffering from. Always describe how things are for you when at your worst, never the best.

Can I draw your attention to a post I made quite late last night? - some people may not have read it, and I think it will be of great use to those who are suffering a long term illness, or disability.


I think that it’s great you’ve shared this Helen, thanks. When it was thought I’d suffered from two mild strokes a couple of years ago, ALD was suggested to me. As it happened, because there was no ongoing changes in my ability to get on with life, I wasn’t eligible, but the process of applying was simply to ask my GP. Fortunately for me, a year or so later after another suspected mild stroke and more tests, I was diagnosed with hemiplegic migraines, which have stroke - like symptoms.