Marfan Syndrome - what benefits?

Apologies, long time replying.  Yes lots of probs relating to Marfans.  Aortic repair.  Heart valve replacement.  Lung probs due to severe scoliosis and now kyphosis.  Two spinal fusions, amputated toes and pinned big toe.  Arthritis in spine and hands.  Worked from 16 to 54yrs - despite health probs but now everything becoming very hard.  Lost my mother, brother, niece and last week a nephew to this awful disease.

Thanks Chloe.  Yes life can be hard at times.  Hubby recently had his PIP change over, lost his high rate mobility and middle care, got standard for both.  DWP go on about musculoskeletal examination that took place, he was sitting, asked to touch shoulders and just below his knees.  From this they deduce that all limbs have normal power.  He has peripheral arteial disease in left leg, stents failed, leg very thin , severe muscles loss, pain/claudication in 3 to 4 metres, leg goes like jelly, needs to sit, but it was decided he could walk 20 to 50 yds therefore loss of mobility and car.  Apparently  walked upright at normal speed - he used a walking frame at the assesment.  Had to go to city for assessment, weather very hot, breathing difficult, nurse reported his breathing as normal and no wheezing.  Hubby has severe COPD, many tabs and inhalers and uses his nebuliser twice a day.  He has put in for mandatory review but dont hold out much hope.  Dreading my change over.

Thanks Chloe.  Hubbys car recently went back as my disabled son decided to hire a car through mobility.  He doesn't drive and me and hubby are down as main drivers. Just as well he did, we would have been without transport.  Spoke to GP yesterday, very supportive.  Said she would write a letter outlining his disabilities and difficulties he has walking with his copd and leg problems.  Didn't charge us anything for doing it.  She said they had not been in contact with her.  She also said about hubby breathing. She asked how long did we wait to be seen and i told her approx 35 mins and about 8 steps into the assessment room.  She said thats why hubby didn't appear breathless as he had been sat , no activity, no wonder he wasnt so breathless. We have put in for a MR, we can only try.  We all look after one another here, thats the way we manage.

Its so difficult isn,t it Poppy.  I class myself as pretty good at filling out forms and writing statements etc.  I worked as a medical secretary for yrs until i had to retire due to ill health so paperwork doesnt faze me but these forms are hard work.  I feel so sorry for people who just hate writing or filling in forms, what chance do they have without advocates etc.  People with longstanding illnesses/disabilities don't always have up to date info.