HELP KAREN SCOTT GET TREATMENT

£103,465 of £100,000 goal

Raised by 1,183 people in 6 months


https://youtu.be/s6h9yzJcXK4 



Hi, I'm Val Constable and the mother of Karen Scott. We urgently need to raise this money within 12 weeks.

All parents will know how they would feel if they were told their child might predecease them so please help me to help my daughter. 

As you can see...she is always smiling despite being in considerable pain. (Apart from behind closed doors as you can see from another photo!)

Please read Karen story below. #helpkarenscott
36587836_1548617432599739_r.jpeg
Karen’s story:

I have hEDS with the gene mutation associated with clEDS. Ehlers-Danlos is a genetic condition where the collagen in the body is faulty. Collagen is everywhere in the body including the major organs and for many years now it has caused issues with my joints, muscles, heart and digestive system and I am in constant pain. Up until 2016 I was able to remain working as a director of a firm for 3 days a week, but I was declining rapidly and had to concede defeat, which did not come easily. For many years prior, I had an M.E diagnosis and my EDS was undiagnosed. Since 2016, I’ve gone from using crutches to using a mobility scooter and now to a reclining wheelchair which was necessary due to attacks of blacking-out.

 

Unfortunately, due to the EDS the ligaments in my neck are now too weak to hold my head. It feels as if my neck is a paper straw and my head is a bowling ball and I’m two inches shorter than I once was due to spinal issues. I have Cranio-Cervical Instability and Atlanto Axial Instability and require an operation privately in Barcelona to rectify matters. This involves fusing the vertebrae from C0 to T1/T2 and whilst I will never be able to turn my head again, it will prevent further neurological damage and the body tremors I am now suffering. Without this surgery I may end up paralysed or worse. For every day that goes by, the risk increases. There is no neurosurgeon in the UK available to perform this operation on those with EDS.

 

I usually spend my time trying to help others from my bed. This includes acting as a trustee of Sussex Ehlers-Danlos Syndromes. It doesn’t come naturally for me to have to ask for help for myself. I also worry about whether anyone will want to help a 51-year-old lady rather than a younger person which I appreciate is more emotive, but I am not exactly old and I want to live and watch my grand-daughter grow up and to spend time with my children and my wonderful husband. They all need me. I desperately need your help in order to do so.
 

For details of the fusion visit: https://drgilete.com/ and click on the tab for CCI & EDS

For details on EDS visit: https://www.ehlers-danlos.org/
+ Read More
I am trying to balance not inundating you with updates with not wishing you to think I have forgotten you now I've had surgery. Since a couple of people have emailed asking how I am, I am assuming an update is a fraction overdue.

This weekend I will be 52 and post fusion on 3rd August: 6 months ago I was not sure I was going to make it to 52 and I wouldn't have done without all your kind support for which I am and will always remain so thankful.

People contacting me for help has now calmed a little although I am still being contacted from people around the world asking for help and advice.

Since my last update, I have had a couple of blips. I ended up in A&E with blood pressure of 190/130 instead of the norm of 120/80 and got a ticking off for putting my body into shock by trying to come off some of the medications whilst upping my steps each day. I didn't think doing 2000 steps a day was overdoing it, but apparently with the meds reduction, I pushed my luck. Subsequently, I saw my GP who rearranged the pain meds (and their reduction) and who put me on stronger bp meds. She and the Dr at the hospital also checked my head as I have a bony lump on it. They both believe it to be a fracture (it was not there when I left Spain incidentally) but are unconcerned. The other possibility is a bone spur. Anyway, that is not causing me any issue.

I also managed to push my luck last Saturday at a wedding. High winds at the end of Eastbourne Pier did not help my neck during the photos nor the long day. By 9pm I was in a hotel room with a temporary loss of my right leg which had gone dead and a pulse that was playing up. I am fine again after 3 days rest and to be honest, I was just grateful to be at the wedding at all.

The only other thing is I have a part frozen shoulder on the right side so there have been a few laughs where (not being able to bend my head nor raise my arm properly) I have been stuck half out of my clothes bending from the waist over the bed. (I'm having acupuncture to ease it). David also thought it was hilariously funny the first time I decided to drink out of a can without thinking and threw the lot over myself. Yes...I need a straw or a wide rimmed drinking vessel! Anyway, I hope that has made a few of you grin. I have a water bottle with a flip up straw now. It says "I can and I will" to remind myself how far I have come! I am being good and have tried to do less than 2500 steps a day since the A&E visit.

I will of course always have EDS and the fusion takes until next May to fully set. I therefore have to use the neck brace on transport of any type (or in any situation where I might get a sudden yank, such as walking the dog). I have applied for a driving assessment as not being able to drive is frustrating me. I am also not able to lift more than 2kg either until the fusion is set - so as visitors have found out, a full kettle has to be lifted by them if no family member is around to help.

All in all I'm doing really well and I am (of course) still smiling and trying to help others. This is how the world should work. We all help in whatever way we can. Thank YOU for helping me!
+ Read More
Just a further update to you all...I am continuing to make fabulous progress. The last two weeks have been a bit manic with the press etc. (one interview left on July 3rd) and also I was inundated with requests for help from both the M.E and EDS community. I ended up putting together an 11 page document to save repeating myself. Anyway, this is why I have been a little quiet. I didn't want you to think that now I'd had the op I had forgotten about the generosity of you all. Of course, if the doctors ask...I've been resting the whole time! Sssh! ;-)
+ Read More
Please see new BBC South East News 3rd June video showing how I am now on the home page of this, my GoFundMe page: www.gofundme.com/help-karen-scott-get-treatment
+ Read More
I wanted to update you all as I appreciate that not all of you are following @helpkarenscottgettreatment on Facebook (although it is a public page so you should be able to access it without having a FB account).

The surgery was an amazing success! I did have some Mast Cell issues - firstly during surgery I had a reaction to whatever they covered my back with. Dr Gilete showed me a photo and I looked rather like a cooked ham! I then had a reaction to Ketamine (it was mixed with Morphine) which had to then be removed from me via my line until 400ml of black gunk was collected. Finally, I had a reaction to the anticoagulant injection in to my stomach which affected my breathing. Mast Cell issues are very common in EDS patients. However, within 2 days after coming out of my induced coma in ICU, I was sitting up which is no mean feat when you have just had two ribs removed on one side of your body. (That is 8 layers of muscle stitching incidentally).

I would love to show you the video of me walking now, but if you want to see that you will have no choice other than to go to my FB page. The two photos below show the difference in my appearance. The first one was taken on Feb 18th. The second was taken 2 weeks after I came out of ICU!! They have not been tampered with...this is what happens to your colour when your oxygen can flow freely. The picture is with a 24 yr old nurse who has adopted me as her English Mummy.

I now have no urinary issues (can't tell with bowel yet as on too many meds still), can walk without knee braces and yet have not dislocated and instead of feeling always nauseous and vomiting at least twice a week I've had no symptoms of either at all. My temperature, blood pressure and heart rate are all behaving themselves too so no fainting or dizziness! I am still getting tired, but rather than spending 16-18 hours flat on my back, I feel better upright and I am up all day - I should be resting more, but I am inundated with requests for help from those in a similar situation - although I do have a tendency to nod off at 8pm.

The treatment I received at Chiari & Hypermobility (hospital Teknon) Barcelona was second to none. The communication between the pain specialist, anesthetist, mastcell specialist, surgeons, nurses, ophthalmologist and the patient liaison Amy was amazing. My scars are healing brilliantly too. Thank you all so much for not only saving my life but allowing me to have a quality of life. The only thing that I am going to struggle with is the fact I am not allowed to lift more than 2kg (which is barely anything) for a year.

Meantime, my granddaughter who I have mentioned previously as having issues with her dislocating wrists, has broken one of them simply by rolling over. Fortunately there is a new unit opening in Harley Street for children so I think we will have to get her up there sooner than later as there is more than just the wrist issue going on. Nana is very sorry to have passed this on to you sweetheart. :-(
+ Read More
Read a Previous Update

£103,465 of £100,000 goal

Raised by 1,183 people in 6 months
Your share could be bringing in donations. Sign in to track your impact.
   Connect
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
HA
£20
Haydar Ahmed
8 days ago
AH
£10
Anne Hudson
3 months ago
£35
Anonymous
3 months ago
KS
£50
Karen Steadman
3 months ago
£20
Sandra Burdon
3 months ago
DR
£100
David Rusden
3 months ago
LB
£150
Liam Brown
3 months ago
VP
£23
Village Shop & Nick The Butcher Collection Pots
3 months ago
CC
£42
Cafe Nero Collection
3 months ago
JC
£5
Jewson Collection
3 months ago
or
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a £5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.