Ciara’s Fight for Life - Life With Ehlers-Danlos Syndrome

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Ciara’s Fight for Life - Life With Ehlers-Danlos Syndrome My name is Ciara, I'm a 22 year old who was diagnosed with Classic Like Ehlers - Danlos Syndrome in 2021 and multiple co-morbid conditions. Thank you - Ciara

I am 24 years old, a patient, advocate for Rare Diseases and EDS
I am extremely passionate about helping others to understand how to communicate with healthcare professionals and advocate for themselves. I'm also an advocate for people with rare diseases. The reason I decided to create this page was I couldn't find all the info I wanted on EDS in one area especially for younger people. So I though

t if I posted some of the info about my condition and other rare conditions, it might make it easier for people who would like to know more and give a better insight to what it's like living with such a difficult life. Feel free to ask any questions you like.

09/02/2026

Who needs to know about KnowMeTag?? EVERYONE!! The more that know about it the more powerful it becomes!! Who needs to stock ot???!! Anyone who's in the heart of a community and wants to help that community be heard in times of emergency. Please share!

07/02/2026
02/12/2024

Ciara's Birthday Fundraiser for Rare Irelan

Please join us in supporting Rare Ireland by wearing your Christmas jumper to support children living with Rare Diseases...
21/11/2024

Please join us in supporting Rare Ireland by wearing your Christmas jumper to support children living with Rare Diseases! ❤️

Host your Christmas Jumper Day to support children with rare diseases.

Your support will help us provide services to children affected by rare diseases, including genetic appointments, speech and language therapy, physiotherapy, occupational therapy, equine therapy, psychology, and counselling services.

Our support means families avoid 2-year waiting lists for genetic appointments and children have the opportunity to reach their potential by receiving therapies unavailable within the health service.

Click the "Learn more" button below to get involved

21/11/2024

Host your Christmas Jumper Day to support children with rare diseases.

Your support will help us provide services to children affected by rare diseases, including genetic appointments, speech and language therapy, physiotherapy, occupational therapy, equine therapy, psychology, and counselling services.

Our support means families avoid 2-year waiting lists for genetic appointments and children have the opportunity to reach their potential by receiving therapies unavailable within the health service.

Click the "Learn more" button below to get involved

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Ennis

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+353876025361

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