Help save Leah
Donation protected
I am a 37 year old Mummy recently diagnosed with Ehlers danlos syndrome.
Both of my internal jugular veins are almost completely blocked which was discovered in July of last year by Kjetil Larsen via self funded scans.
This causes numerous problems including pain and loss of use of my arms and legs, episodes of altered consciousness and feeling like I’m not really here, severe deep head pain, speech problems, vision issues and face and mouth numbness. When I try to move from bed to the toilet it sets off stroke like symptoms where my left side drops and feels heavy like concrete.
In the last week I have discovered that I have a blood clot in my head, this is also more than likely down to the blocked internal jugular veins.
There is an NHS Dr that is a specialist in dealing with my particular issues but he is in England and I am in North Wales.
In December last year both my Gp and the NHS specialist applied for cross border funding for me to be treated by him, but the application has been declined and so has the appeal made by the NHS specialist himself.
As Wales works very differently to England I have to go to the hospital that my local heath board have a contract with. As a Wales patient I am only allowed to be referred to that hospital and no other.
Sadly over the past 2 years this hospital have amongst other things misdiagnosed me and actually booked me in for a surgery that according to a second opinion had a high potential to cause brain herniation so understandably I have no faith in them and cannot put my life in their hands.
I am lucky that the NHS specialist also sees and treats people privately, my body simply cannot wait any longer due to constant denial of nhs cross border funding.
I need stenting on each side and I don't yet know if i’ll also need styloidectomies because specialised imaging and other testing needs to be done first.
I have been mostly bedbound since early 2017. With the help of some incredible people I believe that I have finally found the last piece of my health jigsaw and I desperately need your help
Thank you so much for reading
Leah x
Both of my internal jugular veins are almost completely blocked which was discovered in July of last year by Kjetil Larsen via self funded scans.
This causes numerous problems including pain and loss of use of my arms and legs, episodes of altered consciousness and feeling like I’m not really here, severe deep head pain, speech problems, vision issues and face and mouth numbness. When I try to move from bed to the toilet it sets off stroke like symptoms where my left side drops and feels heavy like concrete.
In the last week I have discovered that I have a blood clot in my head, this is also more than likely down to the blocked internal jugular veins.
There is an NHS Dr that is a specialist in dealing with my particular issues but he is in England and I am in North Wales.
In December last year both my Gp and the NHS specialist applied for cross border funding for me to be treated by him, but the application has been declined and so has the appeal made by the NHS specialist himself.
As Wales works very differently to England I have to go to the hospital that my local heath board have a contract with. As a Wales patient I am only allowed to be referred to that hospital and no other.
Sadly over the past 2 years this hospital have amongst other things misdiagnosed me and actually booked me in for a surgery that according to a second opinion had a high potential to cause brain herniation so understandably I have no faith in them and cannot put my life in their hands.
I am lucky that the NHS specialist also sees and treats people privately, my body simply cannot wait any longer due to constant denial of nhs cross border funding.
I need stenting on each side and I don't yet know if i’ll also need styloidectomies because specialised imaging and other testing needs to be done first.
I have been mostly bedbound since early 2017. With the help of some incredible people I believe that I have finally found the last piece of my health jigsaw and I desperately need your help
Thank you so much for reading
Leah x
Organizer
Leah Smith
Organizer
