why isnt chrohns reconized,and lets get it reconized by whoever

by simon roden
(cheshire)

hello i am mr simon roden,i have been suffering with chrohns,for around 16 years now,i have lots to say,but firstly can anyone tell me why it hasnt been registered has a disability,or reconized? ie like diabetes,or other such dieases,if abyone can shed some light please comment.

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Why isn't crohn's recognized? NEW
by: Annette Young

Hello there,

Thank you for your post.

It does seem ludicrous that a condition like this does not enable those with the disease to be able to register that they have a disability. I completely support your frustrations.

My mother was initially diagnosed with colitis for some years before being told that she actually had Crohn's disease. It was a very frustrating time to her and for all of us as she literally wasted away, her weight has dropped dramatically and she was almost skin and bone. Fortunately, due to the medication she was on and perhaps because the condition decided to suddenly go into remission, she started feeling a bit healthier.

Unfortunately, she also had rheumatoid arthritis-in fact, had been diagnosed with RA for many years and although this had kind of gone into remission to, it left her with very painful joints and an inability to then walk more than a few paces.

I am telling you all this because even at that point she was unable to receive any type of disability benefits and when she did apply. the medical and the constant form filling was just a nightmare. She did eventually get full disability benefits but not because of the Crohn's or because of the rheumatoid arthritis but because she'd had her legs amputated due to a later health condition and this finally satisfied all of the clauses of the disability living. But it was a high price to pay of course.

Sadly, those who do not have any dealings with Crohn's disease, really have no idea of just how painful and debilitating it can be. Some of this is because Crohn's is quite a secretive disease. Who wants to talk about how many times someone has had to dash to the toilet that day? Many Crohn's sufferers simply do not want to talk about the disease and find it embarrassing or uncomfortable. While I understand this, I do believe that we should talk out about the disease so that the average person can see that it is a real issue and is not all in the mind.

I do believe that those with severe bouts of Crohn's should get some support from the health system because it is not a disease that is going to go away and anything that can make life more bearable is a positive.

Best wishes,
Annette Young

Disability
by: Anonymous

I have had Crohn's for 10 years. I applied for disability a few years ago. I finally go to court next week to fight my case with disability. My lawyer and doctors think I deserve it, but we'll see what happens. Crohn's is now recognized as a disability, but its hard to get, as any other disease really. You always get turned down first time and I was told not to give up. You have to prove you can't work with your disease and that is hard b/c most people have to work. You can not be working when you apply for disability and it can take years to get. I am going on 2 years of waiting. I can't work, my disease controls my life. I am lucky my husband has a great job and we do the best we can. Treatment is expensive and we sacrafice alot for my health. Its a hard life and a horrible disease to live with. One thing you definitely need is a doctor who will support your disability and will work with you as you go through the process. Its alot of work for your doctor. Good luck.

Crohns and Rheumatoid Arthritis
by: Anonymous

Not only do I have Crohns but I was also told I have RA. When the Crohns acts up it is bad but when the RA acts up the Crohns seems to get worst. Tired of People thinking it's cool we can loose weight without trying. I lost 20 pounds in a month from the Crohns and I want to cry from the pain in my stomach but try dealing with the pain from the slow twisting pain from the RA and crying isn't helping. So now I am ANGRY!

Chrons being reconized????
by: LIZZIE

Hi i am 31 years old live in the uk and have had chrons for the past 12 years.

I have been told the NACC are currently trying to get chrons patients exempt for perscription charges but dont honeslty know if this will happen as trying to get anyone to understand this nasty disease unless you have it urself is very hardwork.

I will keep you informed if i hear anymore about it xxx

We suffer just as much
by: Jodie

Im 18 and from the uk, and as a Crohns sufferer myself, i think its appauling that it isnt considered a disability. I applied for disability living allowance, and was declined over and over again. People dont seem to understand that it can hit us any time, and that it disables you for hours. It should be recognised!!!

PRESCRIPTIONS
by: Anonymous

I agree we don't have much choice about medication we have to take it to try to live a normal life. Diabetics get free prescriptions, but asthmatics don't so that makes no sense either.

REPLY
by: Anonymous

Thats exactly what I have thought.............I have spent sooo much money on prescriptions!!!

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