To prevent an irritation at the injection site when using Aimspro to start with.
Should there be a droplet adhering� to the tip of the
needle after venting the air from the syringe, tap the
syringe with the fingertip to remove the droplet.
This prevents the serum from contact with the skin and does stop the itchiness etc.
Most should find this very effective.
I have had MS since 1968 ( 41 years ) The first 22 years were Relapsing/Remitting,
mainly in remission - I was very lucky. However the last 19 years have been Secondary
Progressive, but I have NOT let it affect my Quality of Life (well as little as possible).
I believe that this has been due to PMA (Positive Mental Attitude). I have MS but
MS has not got me. OK I am now in a wheelchair, but I look on the wheelchair as an
aid and not a necessity. OK there is no cure for MS today but there may be a cure
tomorrow. MS is NOT the end of life as we know it, It is the beginning of a NEW way
of living life.
Bill Irving - Surrey - UK
Hi Peter.
I don't know how many of you will have read the article in The Times 13 01 07, '
When caring clashes with costs - the nasty business of being NICE', which is an interview
with Sir Michael Rawlins who is the chairman of NICE.
There is one section of the interview which I feel has real relevance for Proventus
and it discusses the price or cost put on a healthy year of life. '...........the
case goes to the heart of the nasty business: how does NICE put a value on human
life? The pharmaceutical companies want to discover the secret equation by which
NICE decides whether a drug will be cleared for NHS use. It is fiendishly complicated,
but bear with us: at its heart is its attempt to put a price on one perfectly healthy
year............How much is this worth?
Priceless, many would say, but NICE puts it at £30,000. Very roughly, if the extra
cost of a new treatment to give one good year of health is more than that, there
have to be exceptional circumstance for NICE to approve it.
If this is the case, and should Aimspro, after all its trials, prove efficacious,
at £19,000 per annum, funding on the NHS should not be a problem: good. But somehow,
I am quite sure that it's not going to be as simple as this, and if there are any
members of Proventus who can shed any further light of this issue, I am sure that
it would help our lobbying position greatly.
It seems that those who are affected by Multiple Sclerosis might as well be invisible
when one considers how little is done for them and how little progress has been made
over the last twenty to thirty years, to develop viable treatments for this debilitating
condition.
My wife was diagnosed as having MS in 1991, however, she did experience symptoms
similar to those associated with MS about fourteen years earlier but the specialist
at that time came to the conclusion that she did not have MS. No reasons were given,
but fortunately she had no further problems until 1991, when she was diagnosed after
temporary loss of vision in one eye. Although she is not wheelchair dependent, she
has the difficulty in getting about and requires help with most things around the
house.
From the time she was diagnosed, my wife has only been seen by a neurologist four
or five times. Furthermore, she has not had any treatment from the NHS, apart from
two courses of intravenous steroids, of which, only the first was effective. Because
MS is an ongoing condition, even physiotherapy is not available, at least in the
area we live.
My wife and I are fortunate that we can, in the short term, self fund Aimspro, which
is making a noticeable difference in my wife’s case, but why should we be forced
to self fund? Like most people, I have paid taxes and National Insurance.
Unlike Cancer Research, how often do we hear appeals to raise funds specifically
for research into understanding and finding viable treatments for Multiple Sclerosis?
NEVER! Multiple Sclerosis is clearly seen as a low priority condition but somehow
this has to change.
Although there seems, at this moment in time, to be several potential treatments
at various stages of research, I believe until a much greater effort is made in understanding
the condition, it could be a long time before treatments are widely available to
all in need. Therefore, I feel it is important to stimulate somehow interest in Multiple
Sclerosis and raise the necessary funding to finance meaningful research.
The point of this letter is - while those affected by MS remain invisible and silent,
they will continue to be considered a low priority in the overall scheme with respect
to the National Health Budget. However, a way has to be found to raise awareness
of the desperate needs of those affected by MS so that they are no longer INVISIBLE
but deserving people who are entitled to their share of NHS services.
A man was driving his brand new sports car along the streets of the city and although
he was very proud he was driving carefully just in case a child or dog should run
out from between the parked cars.
Suddenly BANG – a brick had been thrown at his car and had squarely hit the side
door. He stopped quickly, jumped out and ran to see the damage. There was a huge
dent and a nasty scratch on the new paintwork.
Standing watching was the young man who had obviously thrown the missile that had
done the damage – he grabbed the kid by the collar and was about to box him around
the ears when he observed that the lad was in a very distressed state.
“What the devil do you think you are playing at?” the man yelled.
“Please,” sobbed the boy, “Please help me – I had to throw the brick to get your
attention!”
The man enquired, “What are you talking about?”
“My older brother has fallen out of his wheelchair and I can’t pick him up on my
own. Everyone is walking past not wanting to know my problem. Throwing the stone
was my only way of getting someone’s attention.”
The man was amazed and quickly went to where the upset wheelchair and the boy’s
brother lay on the pavement. Gently but strongly he helped to restore the boy’s brother
and his wheelchair to the upright position. He checked that everything was OK and
was overwhelmed by the gratitude he was shown. He got back into his car and drove
off feeling fortunate rather than proud in his new car. It was a long time before
he had the mark repaired as the memory of how it came about burned in his mind. He
shared the experience with many friends and colleagues in the hope that they too
had become alerted to the plight of others through his experience.
This is actually a true story and it happened in Paris.
Multiple Sclerosis-The Hidden Disease
None the less it gives a response to the question asked by Gordon Ellis “The Invisible
People” – “Why are so many disabled people not seen, not heard and not spoken about?”
SW Hampshire
A RUNNING SUCCESS - For her friend and for Proventus
Not only did Jan Smylie see the distress of people with Multiple Sclerosis she also
witnessed their improvement on the drug Aimspro. As her friend of many years, Angie
Garrett needed more funding to continue her treatment and as Jan knew of the work
of Proventus she determined to do something to help all round.
It was a local event that stimulated her interest – ‘The New Forest Half Marathon’
– and she determined to complete it as a sponsored event. Jan had never done any
running and after trying to start alone she joined the New Forest Runners for advice
and support. For over a year she has constantly worked at building up her training
regime and has gone from 2 miles to 5 miles, then on to 7, 10 and eventually to the
thirteen and a half mile race on Sunday 16th September.
Supported by work from colleagues from Roger Murray hairdressing Salon and members
of Proventus she completed the very hilly course in 2 hours. An absolutely marvellous
effort!
How few of us are ever able to say that another person made this amount of effort
for us? Well this time all those with MS can thank Jan Smylie for bringing their
plight to local, national and international interest through news paper coverage
as well as the Proventus News Letter and web site.
From all of us Jan please accept a heart-felt THANK YOU! It is sincerely hoped that
others will follow your example.
