Solutions Summit
UCB/Pharma listens to sufferers
Dear Members,
A few weeks ago I was invited to attend a Patient Solutions Summit sponsored by UCB/Pharma. I was invited to attend as Beverley Finn "Patient" not as a representative of RLS-UK/ESA.
There were many people from all over Europe invited to attend all with different conditions and mixed walks of life.
I met with Freeha, who works for UCB, at St. Pancras station. Also travelling with us was Nick and we were travelling by Eurostar with Brussels as our destination.
We were escorted to our hotel on arrival in Brussels where I was about to meet many brave and inspiring people, one of which was Nick. Despite personal anguish in his life due to the sad loss of his dear wife only a few months before, Nick showed such amazing braveness. He suffers with Rheumatoid Arthritis, or R/A for short, I soon learnt. He had never travelled on his own before and when we all met at St. Pancras he was given a seat on Eurostar 13 carriages away from myself and Freeha. He came through the journey on his own with a smile.
My story today is to highlight braveness and Nick displayed that despite his R/A and his emotions he was such good company and I am sure he bought pleasure to each person that he met in Brussels with his wit and personality.
Another brave person I met was "Alan" a retired teacher from Wales who suffers with Parkinson Disease.
This was a Global meeting of people who suffer with Epilepsy, Restless Leg Syndrome, Parkinson Disease and Rheumatoid Arthritis.
It was an event where it was our time to talk about our own conditions and share our thoughts with the members of UCB. We were allowed to tell them how we feel, how we cope, or not, as the case may be. How UCB can improve our lives. The event was one of total thought, care and consideration to all our needs. We all met up at our meal times and went to our own groups and workshops during the day to discuss our own specific conditions. Interpreters were on hand via our headsets so we could all understand what was being said.
Another such brave person I met was Catherine who suffers with epilepsy. She eventually managed to keep her health in check and under control. She told us of how she had just got married and wanted to start a family but there was a price to pay. She needed to reduce her medication to safeguard her unborn baby. She then jumped from three seizures a year to one per week. But she was such a joy to listen to and an inspiration of hope and that is what my story is all about.
"Hope" is how we deal with our own conditions, in our case Restless Leg Syndrome.
Many days we lose sight of hope with this condition but I am sure there will be an answer for us one day, let us "Hope" it is soon.
Beverley
Who develops RLS?
| Analyses have shown that adults of all ages may be affected, but the prevalence increases with age. RLS typically appears during middle age but symptoms may date back to childhood when the symptoms may have been shrugged off as “growing pains” or “hyperactivity”. Many sufferers report experiencing symptoms before the age of 20. More than 60% of sufferers say their symptoms became progressively worse with age, so symptoms may have been present for many years before medical attention was sought. Many suffer increasing daytime fatigue as the symptoms get worse and sleep becomes more fragmented. Large-scale study groups in Europe and the US have provided evidence that RLS may be associated with high body-mass index, lower income, smoking, lack of exercise, low alcohol consumption and diabetes mellitus. Women seem marginally more likely to be affected than men. There is also evidence to suggest a higher incidence among people with cardiac problems and high blood pressure. |
Cause for concern
As the cause of RLS remains unclear there are hundreds of information sites in the internet, there are hundreds of individual accounts of “cure”, there are many claims to remedies. Many of these claims and information are unfounded, non-scientific and at times could be dangerous to health.
There have many scientific meetings in 2007-2008 which dealt with RLS and the associated disorder of PLM (periodic leg movement: a condition when the leg jerks either as you are about to doze of or when you are asleep). The most exciting discovery is that there appears to be more pointers towards a genetic basis to this condition with the independent discovery of three genes that may be related to RLS. It must be emphasised however, that as yet there are NO specific genetic tests that are available for RLS. These discoveries suggest potential genes that may be responsible for development of RLS in some and much work is needed in future. Firstly Winkelmann and colleagues described a gene called MEIS1 (on chromosome 2) associated with RLS and this gene tends to be involved in development of limbs. Thereafter, Stefansson and colleagues described another gene called BTBD9 (on chromosome 6). Finally, Winkelmann and colleagues also described another gene involved in the action of an enzyme nNOS. Potential implications of these discoveries are huge and in future this may open up new ways of identifying and treating RLS.
From the treatment point of view, drugs licensed specifically for treatment of RLS are pramipexole and ropinirole (marketed specifically for RLS as Adartrel). Both are useful but not all patients respond to these. Rotigotine, a skin patch that works by being applied once a day, has also been licensed for RLS. Like the other two, this is also a dopamine agonist drug and also is used primarily in Parkinson’s disease. IT IS WORTH NOTING HOWEVER, THAT USING THESE DRUGS IN RLS DOES NOT MEAN THAT THERE IS ANY RISK OF DEVELOPING PARKINSON’S DISEASE.
K Ray Chaudhuri
Long recognised
Ekbom Syndrome is not a new condition although it was overlooked by the medical profession for nearly 300 years. It was first described by Thomas Willis in 1672 but it was not until 1944 that a Swedish neurologist put his name to it. There is little medical literature and few properly controlled tests have been carried out. Various names, some now out of date, which have been used are: Wittmacks-Ekbom Syndrome, Anxietas Tibarium, Extra Pyramidal Hyperkinesis, Asthenia Crurum and Molimina Crurum Nocturna. Some research suggests that a gene may be responsible. This is supported by the fact that it often runs in families. A third of all patients with rheumatoid arthritis also suffer from Ekbom Syndrome. Other possible associations are: prochloroperazine drugs, barbiturate withdrawal, avitaminosis, diabetic neuropathy, iron deficiency anaemia, prostatism, uraemic neuropathy, chronic pulmonary disease, Parkinson's disease, pregnancy and smoking. Multiple sclerosis patients suffer acutely if they are unable to move to relieve the discomfort. Elderly senile patients may be forcibly prevented from the walking about which relieves the discomfort. Correct diagnosis is essential. Ekbom Syndrome should not be confused with Meralgia Paresthetica, a similar painful condition of the legs common in the elderly, also with an unknown cause but which can be easily treated by conservative means. (An Australian pain clinic has treated both conditions, when severe, with a nerve block administered under local anaesthetic in the lateral femoral cutaneous nerve.)
