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Hi My name is Clare, I am 32 years old and live in milton Keynes, I would like to share my story with you and explain why I am setting up this page.
My story
i was born with a rare genetic condition called Ehlers danlos syndrome (EDS) It is a connective tissue disorder that is Multi systemic. I have been a full time wheelchair user since the age of 13. I can not stand, walk or straighten both my knees. My joints dislocate with any sudden movement which includes my neck and spine causing chronic pain and fatigue.
I also have stretchy, fragile skin that bruises easily, EDS also effects my organs. in 2015 I lost the ability to swallow solid food and was diagnosed with severe dysphagia, the muscles in my throat are too weak to swallow anything but 5mls of water every hour. In 2017 after losting 14 stone and being malnourished , I was fitted with a feeding tube to receive artificial nutrition straight into my bowel.
Sadly 2019 I became unwell again, struggling with weight loss and not being about to have much of the special feed. Over the past 18 months I'd lost 7 stone, became severely malnourished and had severe bowel impaction which could of killed me. in june 2020 I was admitted to an intestinal failure unit where doctors discovered my bowels are failing so i started on PN - parental nutrition, i recieve IV nutrition via a line that sits in my vein leading to my heart.
Sadly my condition is classed as lifelimiting.
Life has been difficult at times but I always look for the positive and I have a lot to be grateful for.
In 2013 I was gifted the most amazing assistance dog from a charity called Canine partners, Griffin is the most amazing boy who has transformed my sad, bleak and lonely Life into a world full of independence,opportunities and experiences .I've also made so many friends thanks to Griffin. Even though I face lots of health issues and challenges I love being independent , going out by myself with Griffin and making the most of life.
However my condition does stop me from having an active outdoor life which isn't ideal when you have a dog. My joints are very unstable and I get chronic pain from using my current powerchair on (it's more of an indoor powerchair) certain terrain eg uneven paths, gravel, cobblestone paths etc Can you imagine dislocating your shoulder or hip just from a wheelchair bumping you around? This is what I have to live with and it's becoming dangerous because there are certain joints that can cause life threatening conditions if they start to dislocate a lot.
I need to protect my joints as much as possible.
A few years ago my friend got an mybility all terrain powerchair and after having a demo myself, I couldn't believe the difference !!! I felt so comfortable in the very supportive seating system and for the very first time in 32 years I didn't have pain or any joint dislocations AMAZING!!!
I feel I would benefit hugely from having an all terrain powerchair. I will be able to take Griffin for better walks , I won't be hurting my joints at all with the mybility chair. It was amazing driving over all these different terrains during my demo and not feeling any pain. Just thinking of all the things I'll be able to do and places i'll be able to go when I get a mybility powerchair feels me with so much joy. I'll be able to go to our local country parks, woods and lakes. To be able actually join in on long walks with my family will be a dream come true for all of us.
I will be able to go all the places I've not been to in 19 years like the beach , Griffin my assistance dog loves the beach but sadly I have to sit at the top ,on the path watching him have fun from a distance. we have such a strong and unique bond he doesn't like to go off without me.I've cried many tears seeing Griffin looking for me to join him and I hope one day I will be able to join him.
I know I will cry with joy at these experiences most people take for granted.
You can help protect my joints and give me a quality of life that is priceless
All it is going to take is £9,000 to get a powerchair that is going to save my life
Thank you for reading my story and I really , truly appreciate any donations I receive.
Many thanks
clare & Cp Griffin
My story
i was born with a rare genetic condition called Ehlers danlos syndrome (EDS) It is a connective tissue disorder that is Multi systemic. I have been a full time wheelchair user since the age of 13. I can not stand, walk or straighten both my knees. My joints dislocate with any sudden movement which includes my neck and spine causing chronic pain and fatigue.
I also have stretchy, fragile skin that bruises easily, EDS also effects my organs. in 2015 I lost the ability to swallow solid food and was diagnosed with severe dysphagia, the muscles in my throat are too weak to swallow anything but 5mls of water every hour. In 2017 after losting 14 stone and being malnourished , I was fitted with a feeding tube to receive artificial nutrition straight into my bowel.
Sadly 2019 I became unwell again, struggling with weight loss and not being about to have much of the special feed. Over the past 18 months I'd lost 7 stone, became severely malnourished and had severe bowel impaction which could of killed me. in june 2020 I was admitted to an intestinal failure unit where doctors discovered my bowels are failing so i started on PN - parental nutrition, i recieve IV nutrition via a line that sits in my vein leading to my heart.
Sadly my condition is classed as lifelimiting.
Life has been difficult at times but I always look for the positive and I have a lot to be grateful for.
In 2013 I was gifted the most amazing assistance dog from a charity called Canine partners, Griffin is the most amazing boy who has transformed my sad, bleak and lonely Life into a world full of independence,opportunities and experiences .I've also made so many friends thanks to Griffin. Even though I face lots of health issues and challenges I love being independent , going out by myself with Griffin and making the most of life.
However my condition does stop me from having an active outdoor life which isn't ideal when you have a dog. My joints are very unstable and I get chronic pain from using my current powerchair on (it's more of an indoor powerchair) certain terrain eg uneven paths, gravel, cobblestone paths etc Can you imagine dislocating your shoulder or hip just from a wheelchair bumping you around? This is what I have to live with and it's becoming dangerous because there are certain joints that can cause life threatening conditions if they start to dislocate a lot.
I need to protect my joints as much as possible.
A few years ago my friend got an mybility all terrain powerchair and after having a demo myself, I couldn't believe the difference !!! I felt so comfortable in the very supportive seating system and for the very first time in 32 years I didn't have pain or any joint dislocations AMAZING!!!
I feel I would benefit hugely from having an all terrain powerchair. I will be able to take Griffin for better walks , I won't be hurting my joints at all with the mybility chair. It was amazing driving over all these different terrains during my demo and not feeling any pain. Just thinking of all the things I'll be able to do and places i'll be able to go when I get a mybility powerchair feels me with so much joy. I'll be able to go to our local country parks, woods and lakes. To be able actually join in on long walks with my family will be a dream come true for all of us.
I will be able to go all the places I've not been to in 19 years like the beach , Griffin my assistance dog loves the beach but sadly I have to sit at the top ,on the path watching him have fun from a distance. we have such a strong and unique bond he doesn't like to go off without me.I've cried many tears seeing Griffin looking for me to join him and I hope one day I will be able to join him.
I know I will cry with joy at these experiences most people take for granted.
You can help protect my joints and give me a quality of life that is priceless
All it is going to take is £9,000 to get a powerchair that is going to save my life
Thank you for reading my story and I really , truly appreciate any donations I receive.
Many thanks
clare & Cp Griffin