I read in the New York Times yesterday that $5 b... - Ataxia UK
I read in the New York Times yesterday that $5 billion goes into cancer research annually. $1 billion into AIDS. And ataxia?? Neta
Hellol Neta
I don't think Government money goes into Ataxia research. I think it is because it's so rare that it gets swept away. I guess it's up to us, we have to keep 'banging the drum'
Take care
Fifa
Dear Fifa,
I don't think it is so rare-- 4 in 100,000 is not common but not soooooo rare. Anyway, it doesn't matter because "discoveries" of this sort often help many related diseases such as MS and ALS. My next step is to bombard the American healthy authorities since they seem to have the clout necessary. If there is a relevant name in UK, please share. N
There are many diseases in the same predicament. The more it is known, the more donations for research are given and ataxia is a disease that many people have never heard about. As far as I know, only when it becomes a threat to everybody, like cancer and aids, more money for research becomes available.
I don’t know how rare it is but there is even a pamphlet with information about ataxia to give to your doctor. If a lot of people have it, surely that would not be necessary. My GP looked it up because he never before had a patient with ataxia.
Nobody I know ever heard about it and I go once a year to London to have the condition monitored. The ataxia centre there is one of a very few and they only work a few times a week. It is always a four hour trip there and four hours back and I had to wait a year to get an appointment. With more money that situation would be better.
How depressing but I guess you are right. It's just not enough of a global threat and yet I can't help but think that a "cure" of some kind, might help other conditions. One wonders what the national organization actually do.My GP heard of it but knows very little. The average person is totally clueless. Another dr, involved in stem-cell research, told me that a cure was around the corner. He said that about a year ago.
When I was first diagnosed by a Neurologist and desperately needed something to
help me cope mentally, the GP I saw was actually head of practice. She was the
coldest, most matter of fact person, never once asking me about my condition, I
don't for a minute think she had a clue. She prescribed anti-depressants and that
was that.
When I received the information pack from AtaxiaUK, I passed it on to another
GP in the practice, he had no previous knowledge of the condition. But, he actually
did show some interest, which was heartening.
I think a lot depends on the individual GP, human nature being what it is.
So many conditions have symptoms that overlap, and we all know that Cerebellar
Ataxia is very difficult to define as a particular type, never mind cause.
To actually live with this condition I personally liken to a bereavement. There are
stages to work through and you have to do this yourself to arrive at some sort of
peace. Accept any help that is offered.
Once I stopped fighting against the symptoms, life became a lot easier. We don't
all experience this condition in the same way, basically symptoms are the same
but the severity can vary enormously. In my experience this can be as changable
as the weather.
In 2000 I had an MRI which showed some significant atrophy, the Neurologist said
I would just have to live with it, no real explanation. If he had taken the trouble to
talk to me properly it would have saved me years of mental anguish, I still feel
bitter about that because it would be another 10yrs before a second MRI was done
and I received proper information.
It could be said that during the time between the two MRIs' being done, much had been achieved in the way of research, making the condition easier to diagnose.
Best wishes
Beryl
Dear B,
I can't believe that with so much new technology, there is no help for us. For example a helmet or hat or medication. There is a woman on Living With Ataxia, an American group, who hints strongly that a certain item found in health food stores has helped her severely ataxic husband mightily. I can't decide if this is true or a hoax. Your thoughts??? I found the MRI test (which also showed some atrophy of the cerebellum) to be quite scarey. All the doctors (neuros too) seem to be befuddled by this illness.
I think it is quite frightening to be told you have atrophy of the cerebellum (I was told after a CT scan when my GP thought they would discover nothing) i have just seen a consultant at the local rehab.hospital after a five month wait he assured me he could help me with various support, I feel that at last I may get some advice and support I can only hope that it is available shortly.I,ve no idea how long it will be to the actual help but I live in hope.
Imagine no one even told me anything. I found it out by reading a report. I cant manage to find support. No one is particularly helpful or sympathetic excerpt people on this site My shrink has tried to convince me that I care too much about looks. Bullshit. No one seems to know anything, not the shrinks nor the various therapists. Even the neuros are tapping in the dark. There are a lot of quacks,goons and religious freaks out there.. There has been conflicting info all along. I hope thing are better for you.
Best,
Neta
Hi Neta,
I don't know what product you're referring to, if it was any good I suspect it would
fly off the shelves!
Re the MRI. On both occasions I was allowed to take a CD to listen to while the procedure was being done. I was heavily into the BeeGees for the first one, it went ok. The second
time I took something different, and I almost got to the point where I had to halt the scan!
The pitch of one of the tracks was at odds with the 'scratchy' noises in the scanner, and
it had my nerves on edge! It took supreme self-control not to press the button for help.
I've donated DNA for research, anything to help make some progress.
Best wishes
Beryl
Judging by the internaf forum, more work is done in finding a cure for Friedrichs ataxia. It seems that that one is the more common one and it has very young sufferers.Till a stemcell treatment is recognized and used by reputable clinics in the US and Europe I would not believe in it. To be approved here very solid evidence that it actiually works would have to be shown. Some people have spend a fortune and hope to go to that clinic in China and actually believed that it helped, but it didn't.
Well, I hope something happens soon. It just seems like nothing is happening. Solid evidence. But many drugs were "forced" if you know what I mean. Maybe the pharmaceutical companies fear a small profit. Who knows. The Chinese option doesn't appeal to me either even though their websites are very fetching. I suspect the "cure" will come from stem cells. N
Even if I had the money to pay for something experimental, I don't know if I would take
the chance and have a procedure done.
Expectations might not be full-filled, which would for me, land me back at square one
psychologically in having to come to terms with it all over again.
Anyway, I wouldn't consider it if antibiotics ever reached the point where they were
ineffective!
I am 59 years young, diagnosed 10 years ago with Sporadic Cerebellar Ataxia (unknown cause). No one in my family as far back as we know has/had ataxia, except me (I'm special...,ha!). Seriously, this has been a learning "process" for me, as I have a steep learning curb. Yes, of course I wish there was a cure, but honestly, that's not my main focus now. Trying to keep myself as healthy, physically and emotionally, for as long as I can, is is so important! I've gone through all the "grief "stages, and am finally at the "acceptance" stage, which is so refreshing! This doesn't mean I will ever give up or give in! Ataxia is extremely frustrating and challenging! It just means I've come to terms with my ataxia, and it doesn't "define" who I am. I focus on all I can still do, not what I can't, things like that. My husband and I are attending the National Ataxia Foundation (NAF) conference in Detroit, MIchigan next weekend. I've never been to a conference, but it's being held in the State I live in (each year it's held in a different State). I'm excited to hear the neurologists and other health professionals speak, as well as meet other people with ataxia, as I've never met anyone face to face with this. I'll post some info., if I hear something worthwhile! My best to all..., ;o)
Thanks for your kind words Neta! Yes, I'll definitely let you know what I find out! ;o)
Hi Neta
I still don't know how to blog properly yet, but I left you a contact address on someone elses site you had contacted.
it is ataxia.org
J
I definitely will Neta!!!!! ;o)
Hi Neta
It's true that cancer research attracts loads more funding than ataxia research. BUT Ataxia UK has invested £4m in research over the last 10 years, and FARA and NAF in the USA (having a bigger population to fundraise from) have also put in millions of dollars. In addition there have been two big European Union research projects: eFACTs (into FA) nearly €6m e-facts.eu/ and eurosca eurosca.org/ (into the SCAs) which cost €11m. While these sums don't come close to the money invested in cancer, it's still quite a lot considering the rarity of the ataxias.
You can keep up to date with the progress in research by visiting Ataxia UK's research pages on our website: ataxia.org.uk/pages/researc...
Sue
Thanks Sue for this. Nevertheless when one goes to the neurologist's office, one is told time and again that there is no cure and no medication. I am wondering do doctors read, know or care what's happening in the world of ataxia? I know they are preoccupied by other more famous neurological illnesses such as MS, ALS, strokes,Parkinson's and Alzheimer's, and there are alot of ego's at play-- I am told. Everyone wants to win the Nobel . Are we being overlooked?? Neta
