Astrid's fight for spinal fusion
Donation protected
Hi, my name is Astrid and I have recently found out I urgently need to find £55,000 for spinal surgery that will change my life.
I have a condition called Ehlers Danlos syndrome (EDS) a hereditary connective tissue disease. It causes unstable joints which dislocate daily, severe chronic pain, nervous system failure and gastroparesis - meaning I am intermittently tube fed.
EDS has caused instability in my neck and skull which means I am at high risk from fatal head and neck trauma as my skull slides on the first vertebrae and dislocates when I move my head to the left. This excess movement near my brain and spinal cord is causing nerve damage that's severely affecting my quality of life by destroying my nervous system but if I have stabilisation surgery quick enough I could get resolution of a lot of my symptoms.
I need a full cervical fusion from c0 to c7 to stabilise my skull and neck. In the UK the NHS do not offer this surgery to people with my condition due to lack of expertise but in the USA and Barcelona surgeons are successfully saving lives for people like me with a really high success rate.
I met with an amazing surgeon in Barcelona who is performing this surgery. If I have surgery now I stand a very good chance of getting complete resolution of my symptoms and I might even be able eat normally, exercise again and maybe even go back to the job loved as a science teacher.
I'm not ready to give up on life yet, i have fundraised myself for eds research, as well as being a regional coordinator. I also started studying nutritional therapy so I could help others in my situation get nourishment and health through food, but my life is now on hold and I'm just a shell of my former self.
I am a single parent to two wonderful children and my 12 year old daughter Daisy has the same condition. I need to be here and be strong for her.
Many thanks for reading this and for all your support.
I have a condition called Ehlers Danlos syndrome (EDS) a hereditary connective tissue disease. It causes unstable joints which dislocate daily, severe chronic pain, nervous system failure and gastroparesis - meaning I am intermittently tube fed.
EDS has caused instability in my neck and skull which means I am at high risk from fatal head and neck trauma as my skull slides on the first vertebrae and dislocates when I move my head to the left. This excess movement near my brain and spinal cord is causing nerve damage that's severely affecting my quality of life by destroying my nervous system but if I have stabilisation surgery quick enough I could get resolution of a lot of my symptoms.
I need a full cervical fusion from c0 to c7 to stabilise my skull and neck. In the UK the NHS do not offer this surgery to people with my condition due to lack of expertise but in the USA and Barcelona surgeons are successfully saving lives for people like me with a really high success rate.
I met with an amazing surgeon in Barcelona who is performing this surgery. If I have surgery now I stand a very good chance of getting complete resolution of my symptoms and I might even be able eat normally, exercise again and maybe even go back to the job loved as a science teacher.
I'm not ready to give up on life yet, i have fundraised myself for eds research, as well as being a regional coordinator. I also started studying nutritional therapy so I could help others in my situation get nourishment and health through food, but my life is now on hold and I'm just a shell of my former self.
I am a single parent to two wonderful children and my 12 year old daughter Daisy has the same condition. I need to be here and be strong for her.
Many thanks for reading this and for all your support.
Organizer
Astrid Ivy
Organizer
