Welcome to this our 4th FSH Newsletter.

The past year has certainly been filled with new and exciting advances, we have had the new "user friendly" FSH leaflet printed and I am sure those of you who have received a copy agree that it is certainly a vast improvement on the FSH fact sheet previously sent out to new members.

Smiling is a very important means of communication. When we meet friends or relatives our faces are lit by a smile. Not being able to display this expression is one of the hardest things I have had to come to terms with in having FSH.

As a child, I was singled out as being 'different' at primary school because of my lack of expression. I was beaten up regularly by a school bully, and often missed the bus home as I cowered in a garden, waiting for my persecutor to pass by. I never did tell my parents. In a way I felt it was my fault that I was being singled out for abuse - after all I wasn't the same as everyone else!

The years passed and I went to a 'special school'. Here my disability was less apparent - we were cocooned in an environment away from the hurtful taunts and curious stares. I passed another milestone at age 11, when I finally gave up the battle to keep walking. My legs buckled under me time and time again, and my body bore the battle scars of countless tumbles. I wept bitter tears of defeat and resignation, as the shiny new wheelchair became a part of my persona.

The teen years are never an easy time. Image is very important, especially when you're a young woman out to impress the opposite sex! As well as not being able to express myself with a smile - or any expression at all, I especially hated the look of my mouth with its floppy lower lip. When meeting strangers, my hand would automatically fly up to cover my 'ugly' mouth. I invented ingenious ways of hiding my mouth if a photo was taken by holding up a wine glass or a flower!

My life (and world) were turned around when I met my husband-to-be. He immediately sensed my unhappiness with the way my mouth looked. Andrew gave me the courage to do something about it. I saw a plastic surgeon who performed a small corrective op on my lower lip. It'll never be perfect, but I now feel less of a freak, and no longer feel the need to put my hand in front of my mouth.

We've now been married for ten years, and my attitude to my disability has matured. I no longer feel I am a lesser person because I am disabled. Everyone is different in some way, and we should celebrate and cherish those differences.

On my husband's dressing table is an old black and white photo, taken in the 1950's, of a chubby two year old clutching a toy lamb and staring unsmilingly at the camera - it's one of our favourite pictures.

Author Unknown

The Group made good progress in 1998 and I am always proud to publicise our achievements whenever I can.

Our thanks are due to both Lorraine and Norman Jonas for their hard work and to all those who have contributed such interesting articles for this newsletter.

I very much enjoyed the FSH Support Group meeting on Saturday 3rd October. It was informative and interesting. I also enjoyed meeting all the participants. This was the first time I had attended the annual meeting and I congratulate you on the organisation of the day. It ran so smoothly and was so informal and friendly. Thank you for all the hard work you must have done to host such an apparently effortless day.

I enjoyed Rosie's account of her attitude to FSH and the constant work she maintains to remain as active as she can. Since mainstream medicine has nothing to offer at present I wonder if there are others who have explored complementary therapies and what the result have been? I wonder if I can help?

My sister, Jane Rocco, the American connection, was diagnosed as having FSH two years ago. A blood test confirmed this. FSH has probably been in our family for at least two generations. My maternal grandmother from what we remember of her had mild symptoms. From blood tests my mother, Jane, myself, and our younger brother, Jonathan have FSH. My mother and sister have physical symptoms, my brother and I do not. Jane developed symptoms when she was fifty, five years ago. I will be fifty next year. I also have four children and a grandson, so I have a keen interest in finding ways to combat FSH.

I have worked in the medical field for thirty years. I trained as a nurse but as time went by I became interested in complementary therapies studying herbal medicine and Bach remedies. I have studied homoeopathy for 20 years. Between 1979 to 1987 I used homoeopathy in my dispensary in rural India with excellent results. When we returned to the UK I completed a course in homoeopathy and I have continued to practise. I work from home seeing people of all ages, all complaints and all walks of life. In my opinion homoeopathy is effective and improves and cures many conditions.

Last year I took a Reiki course and found this to be a complement to my homoeopathy and a therapy which can be practised on its own. I have written a few words about both therapies to accompany this letter because I would like to offer both to people with FSH.

I would be interested in your opinion. I am not touting for business or seeking fame and fortune. Once again, thank you for a most interesting and informative day.

With warm regards
Penny Horsburgh

Blepharon is the Greek word for eyelid.

Blepharitis is an inflammatory condition of the eyelids. Oils and other products normally secreted by the eye build up on the lid surface and eyelashes, resulting in symptoms of eye irritation and often redness. The mainstay of therapy to keep this condition under control is always careful cleaning of the eyelids and lashes to remove the irritating substances. G.P's need to be consulted about methods of lid hygiene and this should become part of daily routine

My eyelids are affected by muscle weakness and I am unable to close them while asleep.

My Consultant has suggested using Micropore Adhesive Tape to tape both lids at night-time. This should reduce exposure and improve the eyes' surface.

A progress report will be made at the 1998 Conference!

Gordon Nutter

Hello my name is Andrew Plummer, Chop to my family and friends. I live in Southend on sea Essex, I have been employed (I never admit to working) for the last 13 years by H M Customs and Excise at their Computer Centre at Shoeburyness Essex.

I have two sisters and a brother, all of who have children. I am also studying with the Open University.

Well that’s a bit about my background, I was prompted into writing this article after reading an appeal in the minutes of the FSH conference, which I was unable to attend. So here goes, here is my story:

I was diagnosed as having FSH at the end of November 1988 at The London Hospital in Whitechapel, London. Well it all started when I was about 19, and working in my parent’s garden, and I was having some difficulties lifting my left shoulder, and my mum noticed this and marched me down to the Doctors, who in turn sent me to Southend Hospital to see a specialist.

He told us (my parent’s and myself) that I was suffering from something called Frozen Shoulders and my right shoulder will possibly will go the same way.

All I thought the problem was due to the fact that I knocked my shoulder at work and thought that I had bruised it internally.

Nothing really happened over the next few years, until I started falling over (without the aid of alcohol), I would be walking along and my right ankle would suddenly give way. So after going through umpteen pairs of trousers, I was sent back down to the Doctors, who again sent me to the specialist at Southend Hospital, who this time referred me to see a Neurologist at The London Hospital in Whitechapel. I have forgotten his name, but I mainly had dealings with the Neurologists senior Houseman a Dr Coleman.

I was admitted in to The London originally for two or three days of tests, but a fortnight later, and after numerous tests, the usual blood tests, a body scan, needles put into my muscles to test for electrical pulses, and a muscle biopsy done under local anaesthetic, as the nurses did not have time to give me a pre med before having the biopsy. At the end of the fortnight I was told that I had FSH Muscular Dystrophy, and there was no cure for it though I will have a normal life span. Dr Coleman did give my parent’s the address of the Muscular Dystrophy Group. While I was having these tests, Dr Coleman was also running tests on my brother and sisters and my mum, as he thought it probable that my mums side of the family were carriers as my mums cousin had Duchene MD. And my mums dad had polio and could not walk until he was eight years old. And my mum has had five strokes which have left her partly paralysed on her left side, so again Dr Coleman could not be certain.

The results of the tests showed that my eldest sister had a slight weakness in her face, as well.

When I got home my parent’s wrote to the MD Group, to find out as much information on FSH as they could. The MD Group, sent my parent’s all the information they had on FSH. They also put us in touch with Claire Walker my local Family Case Officer at Great Ormond Street Hospital. Claire was very knowledgeable about all aspects of MD, she put us in touch with another family who has been effected by FSH, again we met up and I found it very helpful and worthwhile. They proved very helpful, and they gave my parent’s the name and address of Robin Brown who was then the chairman of the FSH support Group.

Claire also suggested that we get referred by our own Doctor to see Dr Anita Harding who specialised in Muscular Dystrophy, which we did. and Dr Harding did some of the same tests that were carried out at the London Hospital, and because I was having difficulties lifting my arms Dr Harding suggested that I went to see Mr Edger at the Middlesex Hospital. Mr Edger is an Orthopaedic Surgeon, with a very good reputation. Dr Harding suggested that I went to see him as she thought that I was a good candidate for a Costo Scapular Fusion, (fixing my shoulder blades to my rib cage). An appointment was made for me and I went along to see Mr Edger, he was a very nice person, he said yes he would perform the operation on both shoulders, and he would do my left shoulder first as I was right handed.

I was admitted into the Middlesex in June 1991, about two days before my operation, I underwent a lung capacity test, and had some x-rays done. The day of the operation I was a bit nervous, afraid of the unknown. The operation lasted about a hour and a half, I remember nothing after I was wheeled down to the theatre, until I woke up later that evening, with two tubes attached to me, one from the wound where they took some bone from my pelvis to fuse the shoulder bade to the ribs, (they take the bone from your pelvis as there is surplus bone on it), and one tube feeding me antibiotics.

The following day they try and get you out of bed and moving, which I managed, only a little way!! But as each day passed I was able to go a bit further, it was a little painful to get up from the bed, but it was a relief to get back on the bed. The pain was caused by the bruising of the tissue around the pelvis. After about a week there was no pain, and I was allowed to go home. I could get up and move about with ease. I was not allowed to drive for six weeks, so I had to rely on `mums taxi’. I was off work for about six weeks, I had to go up to The Middlesex as an outpatient but that was no problem, the operation was a success.

In the following January I was admitted for the operation on my right shoulder, again I was admitted two days, before my operation, and the day before I had another Lung capacity test, and an x-ray. This time I knew what to expect and I was more relaxed, again I don’t remember anything until the evening. The following day again I was asked to try and get up, again with some difficulty I managed to get up with the assistance of a nurse. It got easier and easier as time went on and again I was discharged about the week after my operation, I still had to come up as an outpatient, I was off work for about eight weeks this time, but this time the operation did not work, I don’t know whether it was because I tried to run before I could walk!!

I had the second operation on my right shoulder, This one worked okay, but as Mr Edger had to open the right scar over my pelvis again this took longer to heal than the previous two, I think I was walking with a crutch for about three weeks, (not that I’m complaining) again I was off work about eight weeks.

I would recommend this operation too anyone who needs it. It has given me so much more movement.

Since being discharged as an outpatient, and if I have any problems I know I can ring up Mr Edger and make an appointment to see him, without any problems. I could not thank the Nurses and Doctors enough.

Well it has been five years since I had the last operation and all is well with my shoulders. Generally my condition has remained stable, and I am still mobile.

All through the discovery of my MD and through out all my operations my employers have been very supportive, I don’t know whether it is because of being a government department or not. If ever they wanted to know anything they have always asked me straight out rather than beating around the bush.

The future, who knows what’s around the corner, but whatever happens I will look and deal with it positively.

So that’s my story I hope I have not been too boring!!!! I can not thank everyone involved enough, whoever I have met, they have been very helpful and informative.

Andrew Plummer

Our dreams are not the same. But they are sisters.
Sisters perhaps not always seeing eye to eye
But there's a bond that none can break - like sisters
With aims, just like our hopes, equally high.

And if we go some or the way together
We know that we can travel that mile longer.
Have time to talk, and not about the weather!
Gaining in knowledge, feeling our spirits stronger.

So let us share those dreams, share our ideas.
And let us help, cheer, guide - and push! - each other.
We're looking for the same things, it appears.
It will be good arriving there together.

David Sowter

After two very long years searching for a diagnosis for my progressive muscle loss the news that I had FSH MD was almost a welcome relief. My first thought was that I would not have to visit any more doctors and be subjected to the tests and procedures they always recommended and this was indeed good news to me. Then - slowly after reading as much information as I could find on this disease the real impact of having FSH became alarmingly clear not only to myself but to my family.

My story begins 53 years ago when I was born in England. At birth my left foot was noticeably turned inward. No treatment was advised and the foot slowly straightened out though there was always some weakness in the foot and through childhood I would stand with the foot bent sideways. My school days in England presented no significant problems though I was always aware that I could not do exercises involving most arm movements during P.E. but as there was no pain I just thought I was different and being rather withdrawn as a child I never brought it to anyone's attention. For many years after school I had a normal healthy life though at this time in my early twenties I was not very physically active.

In 1971 at age 27 I went to Barbados in the West Indies to live with my brother and his family. I worked at the British High Commission as a secretary for the year I was there. During this time I visited some of the other islands in the West Indies and my desire to travel increased. I left my job in Barbados and decided to visit friends in Santa Barbara, California. I eventually found a job in Santa Barbara as a secretary in a real estate firm. At this time I met Jerry who was one of the real estate brokers with the same company. We married in 1973. Living in such a wonderful climate I began to play tennis, swim and I got very involved in jogging. My foot always flopped sideways but I found I could jog quite well and enjoyed this for many years. I was working at this time and very much desired to start a family. After many tests and treatments for both myself and my husband we finally had to come to the disappointing realization that I could never conceive.

In 1985 we took our first tentative steps towards adopting a baby. We were thrilled and delighted, as were all our family and friends, when our adopted daughter was born in September 1985. We named her Jennifer Rose and she has been a constant joy to us.

Since our marriage we had always spent the summers in England with my parents, two brothers and my sister and their respective families and we continued to do this every year. In July l994, I was visiting my parents in England and my father remarked how badly I was walking. My foot had slowly weakened and I had tried to compensate by lifting my hip to walk but I soon had to admit that I had a very significant foot drop. Over the next few months I tripped over my foot many times.

On our return to Santa Barbara I went to two neurologists between September and November 1994 in an attempt to find a reason for the foot drop. I had blood tests, X-rays, MRI's and two EMG's but the doctors were unable to find a cause for the problem. At this point I decided to just get on with my life as I was doing fine though I did not jog anymore. In October 1995 the muscles in my left upper arm deteriorated. it seemed quite suddenly, though I suspect now it was quite a gradual process. Two months later the same muscle wasting appeared in the right upper arm. At this point, realizing I was having difficulty with normal household chores, I became very concerned. I went to see another neurologist and was his patient from December 1995 until May 1996. During this time I had three separate MRI's - lower back, upper body and finally neck and skull and frequent blood tests. A nerve and muscle biopsy was performed on the back of my left leg, resulting in 25 stitches . The incision became infected requiring antibiotics and the final outcome was permanent numbness to the side of the foot. I had a spinal tap to which I reacted badly and had to lay flat in bed for 8 days. During this time five extensive EMG nerve conduction studies were performed. These tests were most unpleasant to say the least and left me feeling exhausted and very weak. The foot drop had deteriorated and it was suggested that I look into wearing a foot brace but I had very negative feelings about that and did not pursue it. The doctor thought I had a serious condition that was destroying healthy nerves at random and now suggested an intensive course of Prednisone. I was extremely opposed to taking this drug, knowing the side effects, but my resolve was weakening and I just wanted to find an answer. I was given two massive doses given intravenously and then tablets for a total of five months. All these procedures and tests produced still no diagnosis and the weakness remained. Then a very costly intensive course of gamma globulin was advised which was administered by intravenous drip over two seven hour sessions. This produced no improvement. We decided to seek another medical opinion at UCLA Medical Centre where I had another examination, blood tests and an EMG. I might add with each doctor Jerry mentioned my awkward scapular formation and inability to raise the arms extended.

During all these tests and procedures Jerry was with me, and sometimes our daughter, Jennifer, then 10 years old. I was beginning now to lose hope and would often become despondent at the prospect of more tests. I tried to remain positive and cheerful as I realized Jennifer was becoming increasingly fearful as to what the prognosis might be. This was a difficult time for the three of us - Jerry and Jennifer gave me so much love and support and gave me strength when I felt like giving up.

It was now May 1996. My doctor now suggested another opinion from a neurologist at Washington University School of Medicine, St. Louis, MO. We arranged for Jennifer to stay with friends for a few days. I remember her anxiety as we left for the airport and she said to me with tears in her eyes "I don't want you to go - I will never see you again". We promised to phone her every day and let her know what was happening. At the hospital in St.Louis I had a complete neurological exam, blood tests and another EMG. The next morning I was prepared for a muscle biopsy to be taken from the biceps area of the right arm. I felt now that I had reached my limit and I was not prepared to see any more doctors. I felt more hopeful for an answer at the hospital in St. Louis as they said it was not a nerve disorder. Two weeks later came an inconclusive diagnosis - we were informed that I had a very active progressive muscle disease but no name could be given for the condition.

As we were about to leave for the summer in England I contacted my sister who is a registered nurse and qualified homeopath and asked her to arrange an appointment with the most qualified and informed neurologist she could find in London. I felt this would be my final quest - I just needed to find a name to this disease and move on with my life.

My sister arranged an appointment with Dr. John Morgan-Hughes at the National Hospital in London. Jerry, myself and my sister went into the examining room while Jennifer stayed in the waiting room. He gave me a thorough neurological exam and as always Jerry pointed out my strange scapular formation. Within half an hour he diagnosed Facioscapulohumeral Muscular Dystrophy. We were astounded, Jennifer greeted me with hugs and huge relief though none of us had ever heard of this disease with its strange sounding name. This was on July 17, 1996. Within a day we were all very well informed. We read all we could from my sister's medical books and my dear friend in Santa Barbara sent us by fax a great deal of information she obtained on her Internet.

We realized my mother also has FSH MD. She has a very pronounced lordosis walk, weak arms and neck and has much difficulty walking. She has over the years, had many bouts of serious kidney disease and we always thought this the reason for her deteriorating health. She had been so concerned about my problems but I knew it was not going to be easy to tell her about this hereditary disease. After the initial shock my father obtained more information but my mother was understandably very upset and would not completely accept the diagnosis of a serious hereditary disease in our family. However my father thought they should both see a consultant in Medical Genetics which they did at Addenbrooke's Hospital, Cambridge, England. They both had an examination and a blood test. The DNA study of the blood would take 6 months for a result. The consultant requested that I have the same test done. We were now back in Santa Barbara and my doctor could find no laboratory that could do the same DNA study in the USA and suggested I have my blood drawn and sent to England to the same laboratory as my parents. I went to England when the result was available and both my parents and I had an appointment with the Genetic Consultant.

He confirmed that my mother and I had FSH MD. The news was extremely distressing to my mother and she blamed herself for passing it on to me. She has always been very concerned about my progressive weakness and continues to be so while still not accepting her own diagnosis. She prefers to focus on me rather than herself while her muscle weakness is much more pronounced. Her walking ability is declining and she cannot walk more than a few steps without sitting down or holding on. It has been difficult for my mother to confront all this at her stage of life. My two brothers and my sister have had the FSH DNA test and are now awaiting the results. I hope and pray that all the tests prove negative not only for themselves but for my mother. My own consolation is that I don't have to worry about my daughter having FSH and I feel God was watching over me during the time I was trying to conceive.

The journey to find the diagnosis of FSH was long and tedious but now is the time to move forward. I wear a brace on my left leg now and have found it extremely helpful. I feel my arm strength has deteriorated over the past year but I feel very fortunate as I can do most things though slowly and I am determined to do as much as I can while I am able. Sometimes by the end of the day my arms ache so much and my elbow joints are painful and then I rest and look forward to the next day when I know I will feel renewed. My family have suggested a have a disabled sticker in my car but I feel this is another step to admitting my continuing weakness and I am not ready to do this or take up a disabled parking place from someone less fortunate than me.

Having been told by my doctor that I can expect more of the same muscle deterioration is not very comforting. I will focus on what I can do and not what I used to do. I still swim and enjoy it very much and when I am in the water I feel as if I have nothing wrong with me.

We all have our own thoughts and fears - Jennifer's teacher tells me that she prays for me in school - Jerry is always understanding and never too busy to listen and I feel I don't have the same concerns about tomorrow as I used to. We will continue to enjoy life and each other and look towards the challenges ahead. A friend of mine in my MD support group told us a story last week. When asked how she had coped with having a son with muscular dystrophy and now a grandson severely affected she said she always remembered a story being told to a group of children - A rabbit was being chased by a dog and was terrified as to what the outcome might be. The rabbit ran away frantically and eventually ran up a tree. One of the children said, "But rabbits can't run up trees!" The storyteller said gently -"Well, this one did............"

Since writing this article last year my two brothers and one sister have received their test results. One brother and my sister have tested positive with FSH. Of the four children my mother had, three of us are affected.

We are corresponding with Dr ffrench-Constant who is the Head Neurologist for the Genetic Research Dept. at Addenbrooke's Hospital, Cambridge. He is interested in doing more research on our family.

My sister is Penny Horsburgh and she is most concerned regarding the FSH and I know has already articles for you.

Jane Rocco - California

I have studied homoeopathy for nearly 20 years. It is a most effective system of healing therapy. Homoeopathy works by stimulating the body's own healing power. This power is within all of us but when a state of imbalance and disharmony exists within the body it is unable to heal itself without help.

Homoeopathic remedies are infinitesimal amounts of natural substances from the mineral, plant and animal kingdoms.

During a consultation the homoeopath asks questions to find out how an individual reacts to the world around. As an example, imagine three people who have a headache. "A" carries on working, too busy to give in to the pain. He becomes short tempered, irritable, exasperated with those around him but will not give in. "B" goes to bed, wants nothing except peace and quiet and not to be disturbed. "C" wants everyone around to give sympathy, soothe his brow, bring him hot drinks and keep him company. All three have the same headache but deal with it in different ways. It is this difference, peculiar to each individual, which will enable the homoeopath to find the remedy needed for each person. Once a remedy has been selected and taken (you only have one dose) you will notice some changes. Homoeopathy seeks to return the body to its normal state. To a state of health and well-being bringing an improvement in the quality of life.

How can homoeopathy help people with FSH?

FSH is a genetic difference from the norm. This is new ground for homoeopathy. I do not know whether the outward manifestations of FSH can be improved. What I do know is that homoeopathic treatments improve quality of life and bring freedom from the set belief systems which blinker us as individuals. It does not change one's personality but widens one's vision of the world. Life has greater harmony.

I would be happy to speak to anyone with FSH with a view to discussing how homoeopathy could help them to cope.

Or look through your yellow pages under 'Homoeopaths' and speak to a local classical homoeopath.

I can also recommend a book for you to find out more about homoeopathy for yourself. Your local library will have more books on homoeopathy for you to consult.

New Ways to Health A Guide to Homoeopathy by Sarah Richardson RsHom published by Hamlyn about £5.

Penny Horsburgh

Reiki is a Japanese word. It is pronounced 'ray-key'.
- Rei means universal life.
- Ki means energy, light, breath.

Reiki is a gentle system of healing which balances the life force by channelling energy. When we suffer from disease we are out of balance, we suffer from blockages and we are stuck in patterns of behaviour which we cannot relieve on our own. Reiki restores this balance, energising the recipient and the practitioner.

Reiki improves energy physically, mentally, emotionally and Spiritually. It will flow to the part of the body where it is most needed.

A Reiki treatment is a deeply relaxing experience. The recipient sits in a chair or lies down on a couch, fully clothed, while a practitioner transmits energy. This flows through the palms of the practitioner's hands. It is not a massage as the practitioner's hands just rest lightly on areas of the body. People often experience tingling and warmth during the treatment. Many people see vivid colours and experience a deep feeling of well-being enabling them to bring greater insight to their problems.

Many people have been helped by Reiki and many find it so beneficial they chose to learn how to practise Reiki for themselves.

Reiki is easily learned by anyone. There are no exams, no studying or writing. All that is needed is a little time, an open mind, a desire to learn and attunements by a Reiki Master. The Reiki attunements open your channels for energy to flow through you. Your energy will increase as you treat yourself, others and even your pets. Your quality of life will improve and you may view your problems in a different light.

How can Reiki be of help in FSH?

Reiki empowers. Your energy will be greater. You will develop a greater understanding of yourself. You will be more in control. The mental and emotional benefits are considerable. If enough people are willing to try we can conduct our own trial into the effects of Reiki on FSH.

Try it!

I would be happy to speak to anyone with FSH with a view to discussing how Reiki could help Or look through your yellow pages under 'Therapists' and speak to a local Reiki Master. I can also recommend a couple of books about Reiki for you to find out more about Reiki for yourself.

Practical Reiki by Mari Hall, published by Thorsons UK price £7.99.

Empowerment through Reiki by Paula Horan.

Your local library will have more books on Reiki for you to consult.

Penny Horsburgh