Rebuild my shoulder and my life.
Donation protected
I have Ehlers Danlos Syndrome (EDS) Hypermobile type type. (see link for horrible details).
In one week in 2015 my marriage broke up and I lost my job. I had been a research scientist with a family. Now I had nothing. I became suicidally depressed and developed anxiety, panic attacks and agoraphobia.
Whilst going through this I was hoping to rebuild my life, living on the disability pay from my job. Then in February 2016 my EDS struck.
I experienced excruciating pain in my arm, neck and collar bone. I couldn't raise my left arm properly. I couldn't stand for more than 20 minutes without horrible upper back pain.
Imagine having a red hot golf ball shoved under your shoulder blades. That's what it's like.
I can't even sit in a chair for more than an hour. That's why my picture is me on a sofa. Lying on the sofa is all I can do now.
The injury is a partial sternoclavicular separation. It's unusual. Very few surgeons specialise in it.
I've been treated at Addenbrookes including an arthroscopy without any relief. I need an operation known as an open sternoclavicular stabilisation. Normally they would use part of my hamstring to stabilise the joint but because of my EDS my tendons are not strong enough to use.
So I need donor material.
I have now spent more than a year on the sofa. The hospital trust will not currently approve the cost of the donor material. It looks like another years wait.
My disability pay is gone. I am waiting for benefits. My parents are using their pensions to pay my mortgage and keep me fed. I am in debt and have no assets to sell pending divorce.
I used to be at the forefront of science developing microfluidics for medical devices. Teaching students. Mentoring young scientists.
Now I am trapped on a sofa watching Judge Judy.
If I can raise the funds I can get the operation done privately and start trying to make a new life.
Please help me. I want to make a difference again.
https://www.ehlers-danlos.org
In one week in 2015 my marriage broke up and I lost my job. I had been a research scientist with a family. Now I had nothing. I became suicidally depressed and developed anxiety, panic attacks and agoraphobia.
Whilst going through this I was hoping to rebuild my life, living on the disability pay from my job. Then in February 2016 my EDS struck.
I experienced excruciating pain in my arm, neck and collar bone. I couldn't raise my left arm properly. I couldn't stand for more than 20 minutes without horrible upper back pain.
Imagine having a red hot golf ball shoved under your shoulder blades. That's what it's like.
I can't even sit in a chair for more than an hour. That's why my picture is me on a sofa. Lying on the sofa is all I can do now.
The injury is a partial sternoclavicular separation. It's unusual. Very few surgeons specialise in it.
I've been treated at Addenbrookes including an arthroscopy without any relief. I need an operation known as an open sternoclavicular stabilisation. Normally they would use part of my hamstring to stabilise the joint but because of my EDS my tendons are not strong enough to use.
So I need donor material.
I have now spent more than a year on the sofa. The hospital trust will not currently approve the cost of the donor material. It looks like another years wait.
My disability pay is gone. I am waiting for benefits. My parents are using their pensions to pay my mortgage and keep me fed. I am in debt and have no assets to sell pending divorce.
I used to be at the forefront of science developing microfluidics for medical devices. Teaching students. Mentoring young scientists.
Now I am trapped on a sofa watching Judge Judy.
If I can raise the funds I can get the operation done privately and start trying to make a new life.
Please help me. I want to make a difference again.
https://www.ehlers-danlos.org
Organizer
Rob Russell
Organizer
