Spine for Sophie

02/09/2026

What are 5 products that you use regularly?
My prism glasses are my favourite because they’ve helped me to continue to do my art whilst laying flat.
And of course I couldn’t be without my migraine cap, I’ve had migraines for many years but they have become almost constant from the CCI so I’m grateful to the person who recommended this to me 🙏🏼💕

If Anyone can recommend a cheaper alternative for the Electrolytes I’d appreciate it, a doctor recommended them to me but I wish I could use more to help the POTS symptoms but they are just so expensive 😬and every penny is being put aside for the surgery fund.

Happy September to you all 🧡


Hypermobile Ehlers Danlos Syndrome | Postural orthostatic tachycardia syndrome | craniocervical instability | chronic pain | chronic illness

30/08/2026

Just sharing a piece of my heart 👩🏻‍🎨❤️
I’ve always loved being in the countryside, the peace and quiet, the adventure of exploring and taking pictures.
Art is my way of escaping my situation and getting the places I loved exploring or places I’d love to see in my lifetime down on canvas.

A friend encouraged me to use my hobby of art to help toward fundraising for my surgery, so what would you recommend selling a digital download or a physical print/cards? Let me know in the comments 👇

26/08/2026

People say “I don’t know how you keep going?” Or “ I couldn’t cope with your life/symptoms”
Answer… in short, you have no choice, there’s no off switch, no taking a break from the pain and symptoms, you just have to keep surviving somehow, keep trying and keep hoping that we can raise the funds for surgery in time, before the irreversible neurological damage is done that the specialists warn me of. I try to keep hopeful and have faith.
But that’s not to say I don’t cry with the pain, and about my life and the situation I am in, trust me I’ve cried so much and grieved over and over the life I was making before this took it all away from me, but I try my best to cling to Hope and find one thing every day that I’m grateful for even if some days that feels impossible, there’s always something to be grateful for 🙏🏼🥺💫
If you’re having a bad day or longer then please know you’re not alone, we’re stronger together
🫂💕



Fundraising | Spinal condition | Ehlers Danlos Syndrome | Craniocervical Instability |Chronic Pain | Vulnerable | Chronic illness life

22/08/2026

Maybe I’m crazy but I felt like an medical alien in hospital 🖖🏼👽

I know this is long overdue but it’s taken me this long to film this without crying my eyes out, it was a traumatic experience and also because of grieving my deterioration and what my current situation has been ever since ( you can watch that on the 6wk update reel).

I knew from my own experience and from talking with doctors and other CCI patients in the UK that the NHS can’t help EDS patients with CCI but I kinda just felt like in an emergency they would be able to do something, so it was really quite shocking that they didn’t know what CCI was or that it could be caused by EDS or what on earth to do to help me. However I was thankful they were kind and didn’t gaslight but instead wanted to try and learn about it, to me that’s a sign of a good doctor!
We explained that having paralysis and slurred speech is often symptoms I experienced from my CCI however it usually doesn’t last this long. That did mean they were willing to allow me to go home when it was a little better, as it wasn’t a new symptom for me and they couldn’t do anything anyway.

All I can do is hope and pray we can fundraise the funds for surgery before it’s too late 🙏🏼❤️

My thoughts are with all my fellow “medical aliens” who have also been told they’re too complex/ rare or been misunderstood by doctors 💕
👽🖖🏼


Medically complex | Hypermobile Ehlers Danlos syndrome | Healthcare System | Spoonie | Craniocervical instability

20/08/2026

My brave girl Sophie 💪🏼💕
she’s been stuck in bed unable to live any sort of life due to severe Craniocervical instability 😢

Our favourite memories together was when we would pack a picnic up and head out into the picturesque countryside surrounding us, park up and take our girls( furbabies) out for a little walk, them gently running around at the side of us on the mobility scooters having a race 🤣 🏎️💨 🏁 then back to the car to enjoy our picnic whilst overlooking a beautiful view and chatting about life together and laughing till our stomachs hurt. This was a picture of one such days 💖

Some days she tells me she doesn’t know how much longer she can hang on like this and is scared. As a mum that just breaks my heart to hear that and see her crying in so much pain yet I know she’s never quit on anything and is strong so will never give up.
It breaks my heart to see my funny, caring and ambitious daughter left to suffer, with all that she loved doing and her career taken away from her by something that could be treated yet I feel like my hands are tied because the only thing stopping her from getting surgery is that we don’t have the funds 💔

Please if you can help her to get her life back, she’s only recently turned 30 and has her whole life ahead of her if she can just get her spine stabilised. If you can donate even a very small donation it would make such a huge difference as it all adds up, Link is in bio💕
Or sharing her page can make a huge impact too and is greatly appreciated 🙏🏼💖

She is doing everything she can to keep going, let’s help her get through this.
thank you for reading this 💖🙏🏼

18/08/2026

✨ Raising awareness ✨
This is my most asked question, and hey I totally get why because I too thought the NHS treated every condition.
I really want to help others facing this situation and I am truly grateful for the EDS/CCI community who have already gone through this process and have helped us know our options as well as the doctors who have guided us through the limited options and this process too.
It’s incredibly sad this is happening in the UK ( and other countries like Canada) in 2026 and things truly need to change with this condition/treatment here but change won’t come in time for me, my specialist doctors tell me I need this surgery urgently or I will face irreversible damage and consequences.
If you’d like to learn more check out the link in bio, there’s an article written on this subject that is very informative or you can see my Go Fund me page as well via the link
💖

17/08/2026

13/08/2026

A very good article

“Once recognized, never overlooked.”

It’s the philosophy at The Center for Neuro-EDS and Craniospinal Disorders (home of world-renowned neurosurgeon, Dr. Paolo Bolognese). It’s a breakthrough acknowledgment that patients with connective tissue disorders often belong to a subgroup that suffers from complex neurological conditions, like , , , , , , , , , and more.

It is with gratitude that we congratulate Dr. Allison R. Bloom, Dr. Ilene S. Ruhoy, Dr. Randall A. Dass, Dr. Amanda Lerner, Dr. Paolo B. Bolognese, and Dr. Petra M. Klinge on the preprint release of their groundbreaking position paper, “Defining Neuro-EDS: A Neuro-Predominant Phenotype in hEDS/HSD and Related Heritable Connective Tissue Disorders.”

Thousands of patients have received life-changing and life-saving interventions as these pioneers in medicine have learned (from the patients themselves) that connective tissue biology often gives rise to a collection of neurological, cranial, spinal, autonomic, neurovascular, and immune-inflammatory manifestations.

An estimated 10-30%+ of hypermobile patients may belong to a neuro-EDS phenotype. At last, there is a vocabulary and a growing consensus around how to recognize this suffering and offer validation, diagnostic clarity, and treatment. We encourage you to learn from this important article, to share it widely, and to become part of the conversation. If you see yourself in this article, we encourage you to show it to members of your medical team so they can, at last, see you too.

It is our ardent hope that this conversation and this work is just the beginning — that neuro-EDS patients, once recognized, will never again be overlooked.

POSTQUAM VISIBILE, NUMQUAM NEGLECTUM

https://www.preprints.org/manuscript/202608.0567

13/08/2026

CCI Update- 6wks post fall.
Not the update I had hoped to give, by now I hoped I would be back to my baseline symptoms but that’s not the case unfortunately.
However I’m trying to focus on what I am grateful for in my life and try my hardest to stay as positive as I can.
I am desperately hoping and praying I can raise the funds in time before I’ve deteriorated to the point of no return.
It’s scary but I try to have faith and be hopeful. Also I love helping people so it’s my hope that I can not only share my journey/Life with Craniocervical instability + Ehlers Danlos syndrome and raise awareness but also help others who are struggling too, whether that be in the comments or DM, to me I feel it’s important we help each other because I can testify to the fact that someone being kind to you whether that’s a little message or kind comment can completely change your life and in my case maybe even save my life with surgery.
I have received kind messages that have have given me strength to face the day and I want to pay it forward with every bit of strength I have left 🙏🏼💕
❤️
Love Soph x

Craniocervical instability | Ehlers Danlos Syndrome | hEDS | Spinal injury | Vulnerable | Crowdfunding | Fundraising | Spoonie community