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Additional support for EPP patients
After having my annual EPP checkup with the wonderful Dr. Badminton, I felt it was the right time to refresh myself on the additional support that is available for EPP patients. Living with EPP, you’ll understand the feeling of not wanting to burden anyone with the levels of pain you experience under the surface so it felt quite unnatural for me to want to ask for help and to start reaching out for help. In doing so, I found that the people I spoke to have been incredibly supportive and forthcoming with their knowledge sharing.
So here’s a non-exhaustive list of the additional support I have found helpful and have refreshed myself on over the past few months:
I never considered applying for a blue badge but upon researching, I can see its many benefits for someone living with a psychological condition (which I would consider EPP to be). People with hidden disabilities can now apply for a Blue Badge (please note that people with EPP may be unlikely to fit the usual criteria). For many of us, our car is a ‘safe haven’ at times and parking close to buildings can be essential to minimising pain and suffering. The people I spoke to at my local council were extremely helpful and made me feel included and validated in my condition. You may need support from your GP or specialist when applying. It’s worth giving it a go if it will mean peace of mind for example, when you’ve had an exposure and you need to head out to do errands in the sunshine.
For more information about how you can apply, check out: www.gov.uk/apply-bluebadge.
If I say Dundee, what comes to mind? For some of us, it’s a beautiful location in Scotland, for others, it’s the reflective (sometimes messy, opaque), suncream. Dundee provides good results for some EPP patients and it’s definitely worth giving this one a go if you haven’t tried it already. It’s quite hard to come by so consult your GP to have them prescribe this medical-grade sun cream for you. You can find out more about this sun cream & other skincare advice on the BPA website.
Whilst I wouldn’t advise swamping your GP with all of your EPP concerns – we know how overrun the NHS is at the moment; I would encourage you to bring your questions that may have accumulated over lockdown to your designated Porphyria specialist. My specialist Dr. Mike Badminton has been a lifesaver when it comes to those tricky questions from Vitamin D tablets to travelling. Don’t be afraid to also reach out to the BPA community via our facebook group for advice and support on all things Porphyria.
When I started to reach out, I found there was a lot of support out there which helped me to feel less alone in the condition. Note to self, being vulnerable is not a weakness and more often than not, people want to help you! There is so much more available to us than this blog post suggests and the BPA website hosts a huge amount of resources regarding additional support so grab a cup of tea and have a browse around the website.
Have you tried any of the support options highlighted above? Drop us a comment on our facebook page and share what’s helped you! We’d love to hear from you.