Sunday, 29 October 2017
As I touched on in my previous post I have recently been given new diagnoses. In some ways they aren’t new, and have been suspected for a while now, but I needed to see someone specialist enough to assess and get official diagnoses!
We (me and my team) have suspected I had Ehlers Danlos Syndrome type 3 for quite some time now, along with associated conditions, however no one here was specialist enough to diagnose EDS locally - its nearly impossible to get an official diagnosis here, and to get a referral to the EDS specialist is nearly impossible without a diagnosis, so we became stuck in a loop while my body increasingly misbehaved and no one knew how to really help. In the end I was told my best option was to see Professor Grahame - the UKs EDS specialist - privately for an assessment appointment. I then got in touch with Professor Grahame and his secretary and discussed whether it’d be worth me going to see them, which it was agreed it very much would help and that he would be able to diagnose and write a report with what should happen next in my care. Yay! Finally getting somewhere! Thats when it hit me that I’d need to find the money, not something I have in abundance, but with friends help I managed to raise enough to go on a gofundme page, and you pay on the day so I could book in advance, I just then had to find the money.
During that time I faced a lot of unexpected hate and belittling, I had a lot of people speak to me who have chronic illnesses themselves but placed judgement on me for going with what had been recommend to me by medical professionals. Many were adamant that if I needed to see Professor Grahame then the NHS would have referred me. If only the system actually worked that way. Unfortunately it doesn’t, and the NHS is incredibly stretched, and EDS is not very well known about, and policy can block the way to many many things that would potentially help. I only mention this because I know that others may go through similar judgement if this is the route they end up needing to go down. The reality is that you have to do what is best for you and for your health, and I wasn’t going to let the judgement of others stop me doing what could potentially help me more than anything else, especially when the professionals say its the right thing.
Waiting for that appointment to come round was hard, very very hard! I tried to keep a diary of everything in the mean time, I asked others I knew who had been for any tips on making the most out of it, but I was so nervous. The day finally arrived and off we went to The Hypermobility Clinic! To put it simply, I needn’t have been anxious! Professor Grahame was the best doctor I’ve ever seen, and also probably the oldest! An incredibly wise man! We went through various questions and examinations, he took some photos of me for his medical journal (once he found out how his phone camera worked) and did some measurements. He diagnosed me with Ehlers Danlos Syndrome type 3, Postural Orthostatic Tachycardia Syndrome and Craniocervial instability (that will be further confirmed and looked at after more testing). He apologised for the medical profession that I’d been so let down with regards to diagnosis and treatment when I’d been showing the key signs for at least 18 years, and stated that it isn’t all that uncommon unfortunately. He is organising various referrals through my GP and I will likely see him again through the NHS now I have diagnoses.
So what are these conditions? I’ll be writing about them in another post soon, I don’t want to overload one post!
Love to you all