Marfan Syndrome - what benefits?

painter

Hi.  I have been disabled from birth.  Have condition called Marfan syndrome.  Very interested in benefit help, albeit not on any income related benefits at present but like to know what is happenitr and keep updated just in case things changupdatehe future.  Hobbie love to paint snd a bit of sewing.  Live with hubby and son.

Lasian_Scope

Hi @painter, welcome to the community!

Please do let us know if you have any questions, and have a look at some of our benefits discussion groups

JennysDad

Hello @painter and a warm welcome to the community.
Not a benefits advisor, I am not the best person to help with that, but there are others on here who will be able and pleased to advise you. Just bear with us and stay in touch.
You're among friends here, and we're very glad to have you.
It's very new, yet, but you might like to have a look at our new 'Kaleidoscope' gallery https://community.scope.org.uk/discussion/41283/kaleidoscope-our-own-gallery-for-members-art-work-crafts-and-photographs#latest You may even want to contribute
Please stay in touch.
Here, listening,
Richard

Sam_Scope

@shonalouise wrote a post for us about Marfan syndrome that you might like to read.

painter

Thank you Richard and Sam.  Just thought i would join as like to know as much as poss as to what is happening with the government and welfare benefits.  Both hubby and I on contributory ESA Support group and have a son who had a brain haemorrhage 6 yrs sgo leaving complete right sided paresis and needing lots of care. Will go into benefit areas to find about if any help with rent as hubby has middle rate care DLA and son enhanced PIP care and mobility.
Thanks.

Pippa_Scope

Hi @painter, you may also like to check out the online benefits calculator to see what you may be entitled to!

Kelly2912

Dwp do not see marfans has a disability it' the other things that go along with the Marfs that important I.e bad eyesight painfully joints heart problems.ect ect 
I' not Marfs myself but hubby childrn and grangchilden are 

painter

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.

Chloe_Scope

Hi @painter and it is lovely to hear from you again! I am really sorry to hear about your family members. It really does sound like you have been through some tough times recently! Is there anything the community can do then please do let me know

painter

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.

Chloe_Scope

I am really sorry to hear this @painter, I wish you the very best of luck! If you need help with the MR then please do ask the community 

painter

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.

poppy123456

They very rarely ask anyone for evidence. It's up to you to prove those descriptors apply to you and not them prove it. The onus is always on you to make sure it's sent to support a claim. Good luck.

painter

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.