This is very good news, involving our member TJSTICKYBLOOD who also helps us with raising awareness at GHIC, and is also involved in writing a book for us based on a medical paper years ago with the BMJ:
Massive thanks to you Tracy
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Huge congratulations to Tracy Jallow Hutchinson - a staunch and hardworking supporter of our charity, who's tireless work with the medical community and beyond, has been rewarded with this honour. Her tireless work in raising awareness around Hughes Syndrome/APS is greatly appreciated.
Warning *long post*but worth reading - or skip to the end for the good news ~then scroll back and read it 😂
2022 has certainly been a year, my health was certainly not it’s finest I started 2022 recovering from a short hospital stay late last year and I have had a hospital appointment each week for about 40 weeks of the 52 weeks of the year . Suspected blood clots, physio, scans and way too many needles to count. Also throw in a dose of covid which to no surprise sent my immune system into over drive. Whilst managing my condition however I have managed to throw in some fun; theatre trips, art galleries,meals out trips away (although I’ve still not escaped the country since covid).I rocked it out in the Cavern and had some R&R in Bath .I continue to be blessed with my perfect family who do their best in all they do. My son who has grown into a fine,caring, hardworking and successful man. My daughter has worked extremely hard raising two beautiful children whilst working and also studying so hard ; getting distinctions in all her essays. Quietly in the background I have continued to use my story and experience to help support both the patient and medical community. I have presented at Kings College Health and Humanities Society . I have taught cultural competence to the whole of year 2 medical students at KCL I also worked in partnership with a medical student who was completing a special study component called art and pain’ and he created a fantastic piece of art that represented me and my condition .I attended Kings College university Teaching Festival to talk about the importance of Patient Educators in medical training and the value they add. I’ve worked closely (via zoom meetings) with a Professor and his team in Patagonia about measures that can be put in place to help chronically ill people return to work . In work I continue to facilitate a monthly support group for people that live with chronic pain which has grown to over 200 members ,bringing topics that can help and support them in their own journey, signposting them to relevant bodies but mostly being empathetic, understanding and an ear that will listen .
I genuinely do all of this to try to help other peoples journeys be better than mine ,if I can help people get a quicker diagnosis , the right support sooner then everything I have been through has purpose and meaning . It took me 17 years and near death experience to get a diagnosis, I carry the physical damage due to the diagnosis being missed ,kidney failure, double popliteal artery occlusion, a resected bowel and more. If I had a timely diagnosis I still would have had some issues but I’d would have been much more stable. So whilst I may come across as ‘here she goes again’ my passion for educating people on Antiphospholipid Syndrome will not disappear until everyone knows what it is and what it’s symptoms are . As a patient I will always continue to work with doctors to educate them away from the textbook ensuring they have a patients view.
II am therefore very excited,extremely proud and honoured to announce that I have graciously accepted an Honour from His Majesty The King for my services to the community and volunteering sector .I received this news mid December and have had to keep it confidential until the Honours were announced, (and believe me I had to check it was in the papers) I’m now over the moon that I can finally share it with you all.
I had always looked forward to celebrating the millennium year and instead I was miserable and in chronic pain recovering from being on a life support machine, so if your life is not where you would like it to be,remember life can change.
I certainly will be celebrating this New Year and I really hope you do too. So despite starting the year weakly I have finished on a strong note . It’s not how you start it’s how you finish .Thanks to everyone that has understood me and supported me ❤️
Wishing you a Happy New Year.
Anyone only have issues on 1 side of their body?
Is it APS or MS or both?
Hi everyone, just wondering how many of you were initially referred to a neurologist for your APS symptoms. My main one was loss of vision.
I’m still not convinced
A really nice Neurologist - and yes I am telling the truth!!!
