APS Support UK - for people with antiphospholipid syndrome, Basingstoke Videos

🌟 Unusual Case Alert: Recurrent Isolated Toe Tremor in APS Patient! 🌟
#AntiphospholipidSyndrome (APS) is known for causing various complications like #thrombosis, miscarriages, and even neurological disorders, most commonly strokes. But here's a case that's truly unique! 🤯 A 32-year-old woman with long-standing APS and other health issues (epilepsy, scleroderma, Raynaud’s syndrome) experienced a persistent tremor in toes IV and V of one foot, only when sitting! This tremor, which didn't occur during sleep or standing, had been ongoing for 30 months, annoying but not painful. Despite extensive testing (EEG, MRIs, dopamine transporter imaging, electromyogram), all results were normal. Her neurological exam was also normal except for the toe tremor. The tremor didn’t change with distraction or stress and was always present when awake, suggesting it’s organic and possibly immune-mediated due to APS. This case is unique as isolated toe tremors haven't been reported in APS before. While #chorea and other movement disorders have been seen, this exquisite localisation and the lack of other neurological symptoms make this a truly unusual presentation! 🤔 🧠 This case sheds light on the diverse manifestations of APS and highlights the need for further research into the neurological aspects of the syndrome. Read more about this intriguing case and let us know your thoughts: cutt.ly/4ese6PK2 🩺💡 #APS #Neurology #MedicalMystery #RareDiseases #AutoimmuneDisorders #Tremor #CaseStudy

📣 Big thanks to Lydia Goodall! 🎉🙌 We want to give a huge shout-out to Lydia Goodall (see below, in the black and red dress), for organising an opera singing recital in her hometown to support #APS Support UK. 🎶✨ Lydia says, “For around 40 years, my mum has been through an awful lot and after struggling with misdiagnosis, miscarriages, strokes, DVTs, CAPS, heart valve surgery and finally, complete kidney failure, she is now at a point where she is able to successfully manage her clotting issues with the appropriate INR and continue living her life due to the miracle aid of dialysis. She is an incredibly strong woman but I know that much of the credit goes towards the wonderful doctors and nurses who have treated her over the years and countless hours of research that went into discovering and understanding the intricacies of such a cruel disease.” On the 16th of March, Lydia showcased her incredible talent and dedication to raising funds for our small charity. And guess what? She managed to raise an impressive total of £130.15! 🎊💰 To give you a taste of Lydia's breathtaking performance, where she was joined by her friends Peter and Shiela Smith, check out the video clip attached below and prepare to be blown away! 👏🎤 Let's give a round of applause to Lydia Goodall for her remarkable effort, talent, and unwavering commitment to making a positive change. #APSSupportUK #CommunityHeroes #Fundraising

In December last year, we shared that Medical Research Foundation fellow Dr Thomas McDonnell won the Emerging Leaders Prize for his work in studying #AntiphospholipidSyndrome and #lupus. Thomas was awarded £20,000. Thomas’ research focuses on #APS, which significantly overlaps with lupus: https://cutt.ly/research-progress-so-far The Medical Research Foundation, who awarded the prize to Dr McDonnell, interviewed Dr McDonnell about his work, which MRF has so kindly let us share with our followers. Again, we congratulate and thank Thomas for all his efforts to research APS and identify potential treatments, and we can’t wait to see what the future holds for you! https://www.medicalresearchfoundation.org.uk/news/emerging-leaders-prize-recognises-future-leaders-in-lupus-research

Congratulations Alex Hewett ! We want to extend our heartfelt thanks for completing the London to Paris cycle on April 15th to raise funds for APS Support UK, in loving memory of your partner Annie Tang. You are an inspiration to us all. Alex says, “A tough, long ride, 3 punctures for the team, a delayed arrival, but we made it. So proud to have done this and raised money in Annie's honour. 💛” Not only did Alex complete the cycle, but he also smashed his fundraiser target of £3,000 by raising an amazing £4,640 so far. We are blown away by your dedication and hard work, Alex. We want to remind our followers that it's not too late to #donate! Every donation helps APS Support UK to provide vital support to those affected by #AntiphospholipidSyndrome. You can find Alex’s #JustGiving here: https://cutt.ly/alex-hewetts-justgiving Once again, congratulations Alex on this incredible achievement, and thank you for your selflessness and generosity. You are making a real difference in the lives of those affected by #APS. #InLovingMemory #APSWarrior

38 degrees want to hear your views on prescription charges. Have you struggled to afford your medicines? Do you have to choose which medications you pick up each month? If you feel the cost of prescription charges is negatively impacting your life, please complete this short survey to share your views. The survey will remain open until the end of October: https://speakout.38degrees.org.uk/surveys/prescriptions-cost-supporter-survey #PrescriptionCharges #NHS #CostOfLiving

Congratulations to Amy, Liz, Macushla, & Suzie for completing the #ASICSLondon10k. Amazingly, they all managed to finish despite the incredible heat yesterday! Amy came in 7th position out of 384 runners in her age group, 800th out of 9500 total runners. An impressive achievement, to say the least. Well done, Amy! All four #APSWarriors have raised an unbelievable £2,760 for #APS Support UK! We are blown away and cannot thank them enough for their hard work and support. If you’d like to read a bit more about why our intrepid team are supporting our charity, or if you’d like to donate, you can find their #JustGiving pages below: https://cutt.ly/suzies-justgiving https://cutt.ly/elizabeths-justgiving https://cutt.ly/amys-justgiving https://cutt.ly/macushlas-justgiving Amy has also kindly shared with us her personalised race video of her crossing the finish line, which you can watch here: https://t6q6n.app.goo.gl/Cc2NS #TeamAPS #AntiphospholipidSyndrome

Good Luck Paula
We’d like to say a HUGE thank you to Paula Lewis-Robinson who is taking the plunge (literally) to skydive in aid of APS Support UK. After suffering recurrent miscarriages Paula was diagnosed with #antiphospholipid syndrome, she says: “I had never heard of (APS) before! This is a condition that I will live with forever now but is currently managed by a daily dose of 75mg of aspirin. Not many people are aware of APS, not even some medical professionals, I wanted to do something to help raise awareness and funds for the #APS charity so they can get on with the research we all need! Many people out there could be living with APS and not know so if I help spread awareness and save just one life that’s a positive for me!” Paula has raised an amazing £333 of her £500 target. Paula will be jumping on the 29th August so if you would like to support Paula in her journey and also support us by donating you can find her JustGiving page here: https://bit.ly/3AAhIjk From everyone at APS Support UK, we'd like to wish Paula all the best and really appreciate everything she's doing for our charity.

Good Luck Tom!
We’d like to say a HUGE thank you to Tom Cottey who is bravely tackling a solo charity bike ride in loving memory of his father Ken Cottey this Saturday. Tom and his family lost Ken in February this year due to complications related to COVID, but as he had been battling with his #antiphospholipid syndrome beforehand, Tom is kindly raising awareness and funds for APS Support UK. Tom will be cycling approximately 45 miles from B&Q in Chard, to Portland Bill – it sounds a long way to us! He’s already done an amazing job with his fundraising – completely smashing his original target and has now raised over £800 – with a lovely donation from the journalist, John Stapleton. If you would like to support him in his journey and also support us by donating you can find his JustGiving page here: https://bit.ly/3xADPEe If you’d like to keep updated with Tom’s activities, you can follow his page here: https://bit.ly/2VCL2H7 From everyone at APS Support UK, we’d like to wish Tom all the best for this Saturday and really appreciate all he’s doing for our charity in memory of his dad.

APS and younger stroke
In collaboration with the charity, Different Strokes, our Medical Advisor, Professor Anisur Rahman, explains how APS can cause stroke