If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.
Find out how to let us know if you're concerned about another member's safety.
Find out how to let us know if you're concerned about another member's safety.
I have PXE, and am looking for a way forward in life in terms of money and health

dodsie12
Member Posts: 1 Listener
Hi my name is Adam and I'm 38 and from the uk . I suffer with pxe and have lost my job in construction due to my disease . I suffer with macular degeneration , stomach issues and intermittent claudication in my legs . I'm a little lost on a way forward in life . I need help with a way forward money and health wise . I just don't know what to do
Tagged:
Comments
-
Hi and welcome to the community
For finances I suggest you do a benefits calculator so you can enter all your own details as there are quite a few things taken into consideration
You can find one on gov website or on here in benefits section
Have you applied for pip at all maybe have a look to see if you would be eligible
As for your health your first point of call is your gp -
Hi @dodsie12 - welcome to the community & thank you for joining. I know a little about PXE as it can overlap in some with my genetic disorder (Ehlers-Danlos Syndrome). I don't know if you are aware that as well as getting support here, there's also a charity for sufferers of this. Please see: http://www.pxe.org.uk/There's also the Macular Society: https://www.macularsociety.org/ with info about PXE: https://www.macularsociety.org/macular-disease/macular-conditions/pxe/As far as financial help goes, you could try a benefits calculator to see what may be available to you. Try: https://benefits-calculator-2.turn2us.org.uk/Personal Independence Payment (PIP) would be appropriate if you find your problems affect some activities of daily living &/mobility. You can see the activities looked at here: https://www.cambridgeshire.gov.uk/asset-library/Personal-Independence-Payment-Descriptors-and-Scores-April-2021.pdfScope has an overview of the benefits you may be able to claim here: https://www.scope.org.uk/advice-and-support/benefits/types-of-benefit/Sorry it's a lot of information, but do come back with any questions as we have members who can advise about benefits.
-
Welcome to the community from me as well @dodsie12
Thanks for sharing your experiences with us. I'm sure losing your job must have been hard, but it's good to hear you're keen to find a way forward.
I can see you've already received some helpful replies above. Please do give that information a read over, and let us know if you have any further questions.
Just to let you know, I've moved your post into our category for discussions relating to undiagnosed and rare conditions. This is because, when I searched online for PXE, I found a few resources explaining that PXE is quite rare- is that right?Online Community Coordinator, she/her
Concerned about another member's safety or wellbeing? Flag your concerns with us.
Want to tell us how we're doing? Complete our feedback form now.
Brightness
Categories
- 55.5K All Categories
- 10.8K Start here and say hello!
- 5.3K Coffee lounge
- 4.1K Disability rights and campaigning
- 1.6K Research and opportunities
- 160 Community updates
- 12.3K Talk about your situation
- 1.8K Children, parents, and families
- 845 Work and employment
- 601 Education
- 1.2K Housing, transport, and independent living
- 1.1K Aids, adaptations, and equipment
- 305 Dating, sex, and relationships
- 270 Exercise and accessible facilities
- 22.4K Talk about money
- 2.3K Benefits and financial support
- 4.5K Employment and Support Allowance (ESA)
- 12.9K PIP, DLA, and AA
- 2.7K Universal Credit (UC)
- 4.2K Talk about your impairment
- 1.4K Cerebral palsy
- 710 Chronic pain and pain management
- 720 Rare, invisible, and undiagnosed conditions
- 774 Autism and neurodiversity
- 953 Mental health and wellbeing
- 315 Sensory impairments
Complete our feedback form and tell us how we can make the community better.