The daily routine that underpins our everyday existence - washing, tidying, cleaning, commuting, and walking the dog. These seemingly simple things can loom as large as an unclimbable mountain when you’re physically hampered and in pain. Marfan syndrome varies wildly in severity between individuals and doesn’t fall neatly into a health category. Some patients need extra help, financial or personal, to maintain their independence. A supporter recently turned to the Trust for our official support when applying for PIP (personal independence payment).

By Dr Anne Child & Victoria Hilton

Q: I have Marfan syndrome and am planning on applying for PIP (personal independence payment)  and need a supporting letter. Is there anyone in the Marfan Trust I can explain my physical problems to, and who could write a supporting letter for me?

A: Since Marfan syndrome varies so greatly from one patient to the next, the condition is not recognised as a ‘disability’ when its effect can indeed be disabling.

I will write to your GP to clarify that I am writing as the Medical Director of the Marfan Trust, a support organisation for patients with Marfan syndrome. This condition is a chronic, life-long illness which causes your disability in the skeletal, neurologic, and cardiac systems. There is no cure, although some aspects are treatable. We would expect it to progress, and therefore your disabilities will predictably increase.

I will clarify that you need help with daily activities and mobility because of this. Whilst you have a very helpful and present family, including your husband who is a terrific support, you definitely need external help too, financially speaking.

Your need for personal independence payment is obvious here. You need help with physiotherapy and podiatry sessions for your back pain and foot deformities. You will need in the future household help for cleaning, cooking and shopping, and possibly dog-walking. As driving becomes more difficult, you will need taxi fares to and from hospital follow-up appointments.

I understand you worked full-time but became very easily tired after your heart surgery, and went back part-time, and then only for two days per week. Your difficulties are compounded by dural ectasia. Even working privately from home has become difficult.

Please attach my letter to your application. I suggest that you collect as many support letters as you can from your care specialists, to amplify and reinforce your case. We are battling against a system here!

Marfan Trust, a CIO registered as a charity in England in Wales with charity number 1198847 at: c/o 24 Oakfield Lane, Keston, Kent, BR2 6BY. Contact us at [email protected] or by phone on + 44 (0)333 011 5256
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