Samantha smith

Just read about this young lady who as struggled for s while after being diagnosed with ehlers danlos syndrome , e d s, which in great Britain effects ,1 in 5000 that effects the ligaments in the neck that support the head unfortunately the operation was not available in the UK , but could be done in America but it would cost nearly two hundred thousand pounds if she didn't have it done she would die and leave two young children behind , to complicate things she developed craniocervical instability secondary to e d s , through a lot of fundraising they got the funds to send her to Arizona to have the operation which was a success even though she still as it it is now stable and she can lead a normal life to think she was about a month from dying to where she is today is s miracle on the downside because it's a genetic disorder her daughter as now got it , if you can look her up just see what a inspirational young lady she is x

[Amk31]

It is always nice to read success stories. Hopefully they can help the daughter too.

[Hidden in reply to Amk31]

I hope so she as been to hell and back ,and being a single mum who couldn't care for her children because of being ill she should be proved and hopefully this country can get the expertise to carry out the operation here with others.

[Amk31 in reply to Hidden]

Yes hopefully. However I believe your nhs is at breaking point. Same with the Irish helath system. They can't cope anymore.

[Hidden in reply to Amk31]

Very true

[Amk31 in reply to Hidden]

😭😭😭😭

[Hidden in reply to Amk31]

Unless you have money to burn we have to wait till letter comes through the door , I have even said ring me if there are any cancellations 😢

[Amk31 in reply to Hidden]

Do you have to get an operation?

[Hidden in reply to Amk31]

Hi had op in 2013 I have cervical myelopathy I was misdiagnosed for nearly 20 yrs till my bladder and bowel packed in ,I had to have op right away I had c4c5 disks taken out then fused it was pushing on my spinal cord now it's going at c3 c6 c7 so when I get a appointment the better

[Amk31 in reply to Hidden]

I am sorry you were misdiagnosed. Will this ok help?my friend has to get neck surgery to reverse her reverse curve of neck and replace a disc. I believe the surgeon will be repairing other damage.

[Hidden in reply to Amk31]

Hi there, my damage was permanent which I have to live with how about yourself.🤪

[Amk31 in reply to Hidden]

I don't know yet if i need surgery. I have straight neck which causes problems plus problems with lower back and pelvis and itb band.

I think once you have accident the damage is permanent. My right side of body feels weak compared to left side. I feel like I have misaligned spine.

I will be going to spinal assessment to see what they can do for me.

[Hidden in reply to Amk31]

You are only young to have these problems listen to your body I had no choice I wished what I know now I did then .

[Amk31 in reply to Hidden]

I am sorry. I think 20 years ago they weren't advanced as they are now.

Yep I know. Bloody stupid driver did this to me. I'm so angry but what can I do.