I'd like to introduce you to our lovely friend Tallulah. We became friends with Tallulah and her mum Heidi at a young persons Ehlers-Danlos Syndrome weekend back in 2023. Tallulah and my daughter Rosina were the same age and we all found comfort in finding others who were having similar struggles.

Unfortunately Tallulah has been having a really horrid time in the last few years but particularly the last year where she has been in and out of hospital with dislocations that have caused functional seizures. No areas of the NHS seem to want to help with improving things for Tallulah. She is now desperate for some fresh eyes on her condition which is so poorly understood. We are aiming on raising some money to enable her to explore some new avenues of treatment. There are some specialists out there and we will find them!

Tallulah deserves so much better and deserves the opportunity to be able to manage her condition in order to live her life well and she desperately wants to get back to college with her friends - she has been out of education for the last year due to being too unwell. Her story is heartbreaking but we want to push forward with positivity that a brighter future is possible.

Please help to give Tallulah some new treatment options and expert advice.

A few words from Tallulah:

I was 14 years old when I was officially diagnosed with Ehlers Danlos Syndrome, which strangely felt like a relief and I was finally able to begin to understand why I was so different to all my friends.

A simple task such as putting on a hoodie can often be difficult for me due to my shoulders dislocating. When my problems first started many doctors said by the time I was 18 I would have stiffened up and my joints would be more stable. Unfortunately this hasn’t been the case for me, my condition just seems to be getting harder to manage daily with hundreds of painful dislocations a year.

Ehlers Danlos Syndrome means that my connective tissues are too stretchy, as the collagen is faulty and so far it’s affected my ankle, fingers, hip, jaw, ribs, knees and my shoulders.

When people hear about all of the issues and challenges I have to face daily because of my EDS, such as frequent dislocations, chronic pain, gut and eating difficulties, functional sickness and seizures caused by pain, they often ask how I deal with it?…but the truth is I don’t want my life to be controlled by a chronic illness and I don’t want to let it win.

No matter the situation I always find the bright side. Hospital has been a like a second home to me for almost half of my life now, especially this year when I have been an inpatient for a total of 4 months during two extended stays.

I spend hours on end sat in A&E in excruciating pain, just to be dismissed by Orthopaedics and told that me and my Mum need to try and relocate the joints ourselves with no support or advice on techniques to do so.

Unfortunately due to so many failings within the NHS, I still do not have any sort of plan to manage my EDS so therefore have no choice but to explore other avenues of treatment.