Name: Emma
Location: United Kingdom
Diagnoses: Ehlers Danlos Syndrome Hypermobility, Postural orthostatic Tachycardia syndrome
Age at Diagnosis: 37 years
How are you currently treating your condition?
I am receiving private physiotherapy on a weekly basis both on land and in the pool, which is essential to strengthen my muscles as our ligaments and tendons are too stretchy to hold the joints. I use painkillers only when really severe as in a subluxation or injury. I try to manage as best as I can with natural methods like heat packs, meditation, relaxation, and supported rest.
I am receiving private physiotherapy on a weekly basis both on land and in the pool, which is essential to strengthen my muscles as our ligaments and tendons are too stretchy to hold the joints. I use painkillers only when really severe as in a subluxation or injury. I try to manage as best as I can with natural methods like heat packs, meditation, relaxation, and supported rest.
What are the biggest challenges you have faced since your diagnosis?
Having to explain to people the nature of my condition and how it changes from one day to the next, making it very difficult to make plans, especially with friends. There is still a lack of awareness of my condition amongst the medical profession.
Having to explain to people the nature of my condition and how it changes from one day to the next, making it very difficult to make plans, especially with friends. There is still a lack of awareness of my condition amongst the medical profession.
What are your favorite tips and tricks for managing everyday tasks?
I don't have any tricks but my tips would be to make sure you pace everything. This is so important when managing a chronic condition. And to make sure you have supported rest breaks, where your whole body is properly supported to allow the muscles to relax. This is especially important in EDS.
I don't have any tricks but my tips would be to make sure you pace everything. This is so important when managing a chronic condition. And to make sure you have supported rest breaks, where your whole body is properly supported to allow the muscles to relax. This is especially important in EDS.
How do you manage to keep facing forward every day?
I have a very supportive family who encourage me in any way they can to keep fighting. I also have a great friend who is very supportive and I try to meditate every day.
Do you have a blog you would like to share?
My blog is about my journey living with Ehlers Danlos syndrome.
My blog is about my journey living with Ehlers Danlos syndrome.
Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com.
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