An ice bath a day for the month of May - In aid of EDS

I'm raising money in aid of THE EHLERS-DANLOS SOCIETY (based in the US but is a worldwide charity)and every donation will help. I will be doing an ice bath everyday for 31 days. I will also be spreading awareness through my social media pages with daily updates. Thank you in advance for your contribution to this cause that means so much to me

May is Ehlers Danlos awareness month, I was diagnosed with hEDS (hypermobile Ehlers Danlos syndrome) earlier this year after years of mis diagnoses, extravagant treatments and life changing symptoms.

What will the funds be used for?

Every cent raised during this campaign will be donated directly to The Ehlers Danlos Society who’s aim is to CARE :

Care - Providing life changing support services.

Access - Reducing barriers to care and shortening the diagnostic journey for people with Ehlers-Danlos syndromes.

Research - Ensuring a consistent pipeline of groundbreaking research.

Education - Educating and mentoring all healthcare professionals and individuals impacted by all types of EDS and HSD.

My Story.

My earliest recollection of symptoms of EDS are when I was just 5 years old. I suffered severe pain in my ankles and my mam was told by the children’s hospital I just had “overly bendy ligaments” and I should “grow out of it”.

At 15 I started to get headaches and 12years later I still get those same headaches and just as often as when I was a teenager. (Nothing has/can relieve them)

I was also told I had IBS at 15 years old.

At 19 years old the neck and back pain started but were only prevalent after standing or walking for long periods.

At 24 things started to go downhill and fast! Widespread pain every second of everyday, that’s what I’ve been living with the past 3 years. Not to mention the countless other symptoms I have to live with. (I was told I had this pain because of emotional trauma)

Fast forward to 2025, I’m now 27years old and finally got a diagnosis.

The last 3 years for me have been absolute hell, having to fight to be listened to by healthcare professionals, having multiple surgical procedures (just to see if they helped), endless medications and experimental treatments. All of which could have been avoided had I been diagnosed earlier.

When I finally got my diagnosis I had mixed emotions. I was relieved that I finally had answers. I was sad that the diagnosis happened to be a disease with no known cure. I was angry that I had so many years of my life wasted with misdiagnoses. I was skeptical that this may well be another misdiagnosis.

I am currently still in the grieving process, I am grieving for the old me, the me with little to no symptoms. I am grieving for a life I know I will never be able to have.

Thanks to The Ehlers Danlos Society I have access to support, information and endless advice. I am so grateful to them and I hope I can raise awareness and funds to keep them doing what they do best - trying to ensure people with EDS avoid what I’ve been through and what most people with EDS go through in order to get a diagnosis. I personally have had at least 15 needless surgeries/procedures/experimental treatments.

Thank you to anyone who has took the time to read this, share or donate. You are making a difference in so many lives.

#togetherwedazzle