Siobhan Spencer MBE Becomes a Doctor.
Siobhan Spencer, MBE of the Derbyshire Gypsy Liaison Group has just become a Doctor, having graduated from the Anglia Ruskin University with a PhD.
Her PhD was completed through the Faculty of Health, Education, Medicine and Social Care.
Her study was about “Understanding Myasthenia Gravis within the Romany Gypsy community, Living with the disease and the effects it has on the family.
Congratulations to Siobhan now Dr Spencer MBE from all of us from The Roma Gypsy Post, and the United Roma Nation and United Gypsy Traveller and Roma Alliance .
Some one who knows first hand about this disease is our own Secretary and researcher Cathay Birch here she explains a little about her own experiences since she was diagnosed with the disease Myasthenia Gravis.
I have suffered from \myasthenia gravis since the age of 9 and I am now 67 years old.
I know two Romanies who have it though one has died now.
.It is a very rare illness and not a lot can be done about it.we survive on prostigmin and steroids which make us fat, and also causes osteoporosis.
sometime the meds work and sometimes they don’t.
When they don't every muscle in my body relaxes except the heart which keeps beating but eyes close, you cant swallow or speak and as you fall you are taken for a drunk.
Sometimes you need a respirator to help you breathe. You never know when the tablets will not work and you suddenly find yourself on the floor not being able to move or see or call for help.
People around you will start talking about you instead of talking to you.
In a restaurant my husband is always having to thump me on the back as I am choking.
The tablets overwork your bladder so you are always running to the loo. Exercise worsens the condition so you really have to pace yourself at all times and never ever eat alone in case you choke.
FACTS ABOUT MYASTHENIA GRAVIS:
The disease known as Myasthenia Gravis is described as a chronic autoimmune neuromuscular disease, Which causes varying degrees of weakness of the skeletal muscles of the body.
It is caused by a defect in the transmission of nerve impulses to the muscles.
The Thymus may give incorrect instructions to the developing immune cells which results in autoimmunity and the production of acetylcholine receptor antibodies.
The symptoms of Myasthenia Gravis include weakness in the eyelids ( eyelids wont open), blurry or double vision, unstable walking, changes in facial expression, difficulty swallowing, shortness of breath, impaired speech and a weakness in the arms, legs, hands, fingers and the neck.
The condition is not directly inherited neither is it contagious, It is known to commonly affect adult women usually under the age of 40 and older men of around 60 years of age. However it can occur at any age.
The diagnosis for this disease can often be delayed due to the fact that the symptoms of muscle weakness is also a common symptom in other diseases and may have slowly developed.
The medical tests that are carried out to confirm the disease are detecting the presence of immune molecules or acetylcholine receptor antibodies, an edrophonium test and electromyography.
A Myasthenic Crisis occurs when the muscles that control the breathing weaken to the extent that the patient requires emergency ventilation assistance.
The prognosis of this disease is highly variable, some patients have complete remission about 50% with thymus surgery while others have relatively normal lives with continued treatments, and others have a poor prognosis as the disease progresses.
Medical treatments to help patients who have been diagnosed with Myasthenia Gravis include Anticholinesterase Agents, Plasmapheresis and various immunosuppressive drugs, There is a surgical treatment which would be the removal of the Thymus. However the above named drugs are not available in the U.K. Doctors here treat the condition with Prostigmin and steriods.
Research into the disease is ongoing with new treatments being developed and immunosuppressive drugs being investigated. So the way in which this disease is treat will likely improve in the near future. However in the U.K. there is very little progress in the research of this disease . Research on Muscular Dystrophy also takes in the condition of Myasthenia Gravis as the symptoms are very similar.