** thank you to everyone who has donated- the kindness has been overwhelming **
any money i raise over the initial goal will now go towards:
- private blood test panel. this costs ~£160
- physiotherapy - £60 per session - the physio is the same one who referred me for diagnosis and understands my condition well
- b12 injections every 12 weeks which the NHS stopped during COVID- these are crucial for my fatigue symptoms & cost £27 each
- an appointment with an MCAS consultant for advice on medication and managing this complex condition. the specialist recommended to me is £300 for a consult and in london (which would mean train tickets and potentially an overnight stay)
- time off work impacted by appointments or flare ups
UPDATE 16/2/25
i've hit a wall with the NHS and how they can support me. not much can happen as my conditions are relatively rare. we got a letter from cardiology rejecting me for POTS interventions due to my eating disorder.
my next steps are to meet with the MCAS specialist that my genetic specialist recommended and take it from there (see above!)
POST APPOINTMENT UPDATE (early 2024)
i was seen in december 2023 and diagnosed with hEDS, MCAS and POTS. the consultant has written to my GP with recommendations about future tests and medicines.
i'm waiting to talk with my GP about next steps but it is clear that some medicines will need to be privately prescribed (such as a mast cell stabilisation medicine) and some clinics might not be available for me.
this process is exhausting but i'm moving forward now.
my goal will be edited when i know what the NHS can support.
thank you thank you <3
(initial post)
welcome to my fundraiser for medical expenses. the NHS being as it is these days, i have had to resort to accessing private healthcare for my chronic illness.
i will be travelling to have a consultation at the end of december with a senior consultant recommended to me by a private physiotherapist. the doctor i'm seeing has limited availability and only holds clinics in 2 english cities- i'm scottish.
funds that i raise will go towards the cost of my consultation (£350), a return train (£50) and a hotel stay in a major city at christmas time (£100).
from an email from the doctor's assistant:
the doctor i am seeing is a specialist in a genetic condition that several clinicians have noticed i have- despite this, the NHS can't investigate it or support me. i have been back and forth to GPs for answers for over 2 years since a podiatrist suggested that i have EDS (ehlers danlos syndrome).
without a formal diagnosis and personalised recommendations to cope with my condition, i'm stuck with a limited quality of life and feel unable to progress in my career and do the things i enjoy.
i was inspired by one of my favourite musicians, ren, to use this website. he is thriving because he asked for help to fund what he knew would get him out of the woods.
any support is gratefully received. thank you. love you.
Organizer
