A while back I wrote to my local MP, Kirsty Blackman. I wanted to bring to her attention the complete lack of knowledge of Ehlers-Danlos Syndrome among medical professionals. Not just because I have a bee in my bonnet about it, but because If I didn’t have such an amazing support network, I’m not sure I’d still be here and I don’t see any need for more people to go through the same process due to nothing more than medical ignorance. This illness in itself is enough to push most people right to the edge. We don’t need medical professionals dismissing us as attention seekers or malingerers on top of the daily pain and struggles we face. We need doctors who can see that something is wrong and to look for answers – not try and get us out of their office by any means possible.
Then this popped up in my inbox at the start of the week:
Thank you for your message and for highlighting this issue to me.
As you may be aware health is a devolved issue and as such responsibility for health policy in Scotland resides with the Scottish Parliament and MSP’s as such they are best placed to comment on this issue. However I appreciate that many individuals with rare conditions and health issues can experience issues with diagnosis and access to treatment due to the rarity of their conditions and health professionals lack of awareness.
I note that I have unfortunately missed this year’s EDS Awareness Month as this was in May. However I will keep the condition in mind and see what I may be able to do in my role as an MP to raise awareness of the condition.
I have written to the Scottish Cabinet Secretary for Health regarding the condition and passing on your concerns about a lack of awareness on to them. I have also written to NHS Grampian to highlight the issues you experienced with diagnosis and treatment and asked what they are doing with regards to raising awareness.
I attach a copy of both these letters and will forward you copies of any responses I receive.
Member of Parliament for Aberdeen North”
This has made my week. I really, truly felt run into the ground and like I needed someone to stand up for me, and my local MP came through. I still need to make my biblical complaint to the NHS but now it feels easier knowing that the Chief Executive of NHS Grampian is aware of the issue. I’ll copy the letter she sent into the comments section, if anyone’s interested! I’m utterly delighted and can’t wait to hear what they have to say in response.
In other news, I hit 100% of my £75 fundraising target for Ehlers-Danlos Support UK, which is awesome. It’d be nice to get to £100 over the next couple of weeks, but I’m happy regardless. My finger nails are driving me insane but it takes my mind off the pain.
I also found out in pretty spectacular fashion that I am also allergic to Lansoprazole which I was given as an alternative to Omeprazole as it wasn’t really doing anything for my acid reflux. The fact that I’ve stopped both medications and am taking strong antihistamines and eating a low histamine diet and my reflux is better than it’s been for a long time tells me all I need to know. Looking forward to seeing immunology! Officially not taking any more new drugs, not even if my arm is hanging off. It’s just not worth the risk.
Yesterday I saw Katy Kindness, the pain psychologist, who was not a disappointment. She was lovely and very understanding but didn’t really have anything to add in the way of coping mechanisms. She agreed that I’m in a horrible situation and am making the most of it. It was so helpful having the lovely occupational therapist lady there too, as it meant I didn’t have to explain my condition or the extent of my pain. I wish she could come to all appointments with me! So, although it didn’t make me any better, it made me feel more justified in my low moods. It’s not mental illness, it’s situational. And my situation can really suck at times and there is absolutely nothing I can do about it, except eat doughnuts. So I had a doughnut for breakfast today, it was glorious.