Klippel-Feil Syndrome Support Group

Hi There

Haven't been here for a while, but haven't forgotten you all and the support I received here..........was wondering if anyone knew if memory loss was a problem related KFS, I have been to the doctors about it today and I am going to have some blood tests to check any chemical imbalances but there is a small possibility that I have the onset of dementia but wondered if it is just a another side line to this wonderful condition we suffer with ........ many thanks x

not sure but have had metal ilness from since i dont know when most things i cant put in order ta have happened and still cant think straight half the time even though im about 90 percent out of depression

Thanks for that Jay, mine definitely isn't depression, which is why it is so scary, I have heard that damage to your nervous system can bring on dementia so that's my biggest worry at the moment.

but goes to show how no one out there helps yes it does effect your nevous system and when your bones grind on them nerves oh boy does it hurt i guess i got to my lowest point before i changed my life around then i realised that i wasnt a bad person and im the same right to be here as everyone else hit rock bottom and bounced back up that was 2 years ago but i have determination now which efore i didnt so give it all you got i know its not easy living with this crap but least we got each other which is something

it is a life changing condition and mentally as much as physically but I guess the bottom line is we have no choice but to get on with it and live our lives as best as we can xxx

Sarah, my goodness it's great to hear from you again! Seems like it's been forever. A lot has been going on lately -- we've been working on forming a nonprofit KFS advocacy group, if you haven't already heard about it. It's called the Klippel-Feil Syndrome Alliance, and if you are interested, we would LOVE to have you aboard!

Now to the question at hand: Memory loss. I have been having quite a few problems with short-term memory loss over the last year. Whether that is partly due to KFS or not, is a whole other question. There are a lot of things we deal with every day that can mess up the memory process. The pain killers and other drugs we take can screw up memory formation as well as recall. So can the pain and the sleep deprivation that it seems most of us suffer at least occasionally. Setting those aside, at least I have been having problems with brain wasting due to some other disease that they have not been able to diagnose for me yet. I know of one other person who has KFS who is also suffering from a form of memory loss. I won't name any names in case they want to remain anonymous, but they are also suspected of having something else beyond KFS going on with them. So I guess my answer would have to be that I don't know of any direct connection of KFS to memory loss, but there could be one. We are finding out that collectively we are writing the book on KFS as we live our day-to-day lives. We know more than anybody else because we live with it, and when we put our heads together and combine our experience, we can begin to answer questions like this one. So I'll shut my trap for now and wait for anyone else who has some more insight into your question to chime in.

You can count me in on the memory loss thing! But I do remember you, and it's good to have you back!

--Gilbert

Thanks Gilbert, it is lovely to be back, the KFS advocacy group sounds very interesting and yes I would like be part of it.....let me know more. Thanks for your input on the memory problem, I am due to have some blood tests soon and I've got to keep a diary of things that I do that I know isn't normal for me then we'll see what the doctor says...it amazes me that KFS has been around for such a long time but the research into it seems minimal, great to hear from you, speak soon no doubt xxx

Right now, the Klippel-Feil Syndrome Alliance has its main presence as a page on facebook. If you use facebook, you can look it up. We are at the point where we are gathering the troops -- finding out who's interested and what resources we have in terms of knowledge and abilities, etc. Rosie and Lisa (the same ones who are our MD Junction group leaders) are heading the group and organizing things. I'm sure one of them will be along shortly and they will know how you can get in contact outside of facebook if you need to do that. That part about minimal research -- we are trying to fix that!

How are you getting along beside the memory problems? We have missed you!

not too bad, right side of my body feels like it's been kicked black and blue, especially my leg but it's bearable with the help of some tablets, am due to be scanned again soon I think so we'll see where we are after that, so generally getting worse but at a slow pace so could be worse........I am on FaceBook I will look for it now and join.....Many Thanks xxx

Hey Sarah,

I also have memory loss and what I call "disorientation". Partly I think it is due to the long term effects of not sleeping well due to pain/KFS and the stress of coping with it long term. We can tend to short circuit a bit. I find myself making notes and having a hard time recalling information at work if I am asked and I am not focused on that thing... also I process things more slowly if I am doing a task or getting new information. I do think it plays a part with what KFS does to our nervous system and stress of it does not help, and as Gilbert said, our meds may not exactly help matters.

Please let us know what they say or think for you. I will be thinking of you! So glad to see you on facebook!

Best,

Rosie