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We want to hear from you: please tell us about your experience of the online community.

I have PXE, and am looking for a way forward in life in terms of money and health

dodsie12

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

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Comments

janer1967

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

chiarieds

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.pdf

Scope 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.

Tori_Scope

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?

tomjmk

Hi Adam made me sad reading this. Have you made any progress? I have similar PXE symptoms to you and also depression and anxiety and just managed to get PIP after going to tribunal. Happy to discuss.

poppy123456

tomjmk said:

Hi Adam made me sad reading this. Have you made any progress? I have similar PXE symptoms to you and also depression and anxiety and just managed to get PIP after going to tribunal. Happy to discuss.

This thread is from July 2021 and the member hasn't been active since that time so you may not get a reply.