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Living with a Rare Muscle Disease: A Turkish Woman Rises Above Disability, Poverty, and Gender Bias, Rare Disease Happenings Within the GNEM Community

To commemorate Rare Disease Month, observed world-wide every February, I want to highlight a Turkish woman who lives and thrives with a rare muscle disease in spite of poverty and disability.  I was touched by her undaunted spirit , and her perseverance in becoming a productive member of society while facing obstacles that would stop most people.  Fatma is no ordinary person.  Here is her story.
I am Fatma and was born in rural Turkey into a family of eight other siblings. From a very early stage in my life I was aware that I was suffering from a muscular disease namely Limb Girdle Muscular Dystrophy  (LGMD 2E) this was when I was in primary school. My family was not aware of the support they could get for their children because of their socioeconomic level in society.  I also did not know if there was any  assistance available to help me increase my opportunities.

A  low-income family living in an underdeveloped society, and having a disabled daughter in this society, was truly a monumental challenge for my family.  Nevertheless, this daughter had dreams of becoming free, constructive,  and becoming a “fully functioning human being.”  My dreams seemed impossible, and so I realize that I could not accomplish these dreams on my own resources. I know from my experience that everything begins with creative imagination. I think that I remained true to my dreams.

Some questions arose for me such as how could my dreams become real in a society where women were second class citizens who have no right to an education. Maybe I wanted was impossible as a disabled girl since her society did not permit girls to have an education.

When I finished high school, I brought together two friends to help me accomplish my dreams.  These two friends (my sister and my brother) shared with me the same fate, this muscle disease. I knew I could not go backwards, nor give up because I need to be a strong example for my siblings who also have this disease. 
I experienced many insults in primary and high school  nevertheless I persevered to graduate from both.  I thought about attending university but realized that there was no accessible university for people like me.  My family did not have the financial means to support higher education for me. Against all odds, I won  a place in the Economics Department at a university but then found out that I could not ascend the stairs of the building  to take the exams.

Another one of my dreams was to have a job because I knew I would then be economically independent and maybe I would be more creative. I went on to register at an employment agency after I finished high school; however I waited for years for a job but could not find one.  I even wrote to a Tatvan member of parliament with hopes but only received a response that I should be patient.  I waited for years to hear more from this member, but it soon became clear to me that this member did not understand the struggle I had from living in my disabled body. 

During this time I started to think about how other persons who viewed disable persons, and how insensitive, un-sympathetic, and ignorant society can be to us.  It became clear to me that I must then fight with all my power about the difficulties of living in a disabled body.  To me, it seemed that no matter how hard I fought, nobody heard or remotely understood me.  Not only do I live with my disability, my parents, family, and some close relatives also live to some extent in my reality. Sometimes, I feel as though I have heavy shackles on my feet.  There are many obstacles to overcome when you are disabled, for example, when my Math teacher said, “what happens when you are educated,” when the  Member of Parliament won Parliament with my vote who had the same perspective as my math teacher.

Many  people said that it is better if I stayed at home with my family and accept my fate as a disabled person.  I struggle with people who tell me that I should not work, should not go to the university, or should not do this or that.  That would be too many rejections for me to accept because I saw myself as a “functioning human being.” These rejections made my existence very difficult, yet I continued to dream.  According to me, being human, loving, being creative, and being able to work  facilitate human-ness; in fact, these life conditions are very liberating and I want to experience these indispensable qualities of life.

I noticed it is knowledge that I am drawn to by reading books since people avoid my friendship. I find the answers to my challenges in sociology, psychology, literature, and philosophy. Descartes says, “Reading  good books is like talking to the best persons of the past centuries”.  I learned that there was a connection between sensuality and sensibility when we learn more. I noticed that learning was endless, and it illuminates the senses which helped me to state my opinions and ideas.  Learning has empowered me as a disabled woman.  Because of this reality, reading, learning, and loving unconditionally  in any situation, no matter whatever happens are indispensable to me.

My journey as a disabled woman living in rural Turkey consisted of societal norms such as I could not be free to be myself physically because of the stigma associated with disabled individuals. My brain and heart flutter with freedom, the freedom no one can see; however, I feel and know this freedom.  I am not unhappy with my condition now since I as give un-conditional love and affection to everyone I meet.
I am now 45 years old, I lost my brother when I was a child, and I knew that I would be dependent on a wheelchair, like my brother, in the future.  Only that I would be in a wheelchair, I did not know anything else about my disease.  In the earlier years when there was no internet, there was only one way through which I could get information.  It was a journal  named "Hope and Life,” published  every three months by the Neuromuscular Disorders Association of Turkey. My sister, my brother, and I eagerly looked forward to reading this journal hoping to see new developments for our disease.  We met with frustration every time as the journal failed to report on any new developments for us.  We felt helpless.  Finally, in 1992 I went to Istanbul to learn more about our disease.
I remembered that day as I traveled hundreds of kilometers. I talked with my doctor for a few minutes; then he took a sample of my blood for analysis and further told me that I should get a biopsy soon.  I wanted to ask  many questions, but my doctor told me, “My dear Fatma, I have no time.”

I returned to Istanbul very many times for biopsies. I did not hear back about the results of my biopsies.  Years later I learned that the Laboratory of Çapa Medical Faculty Hospital was not equipped to test for my disease. Our doctors did not have the tools to diagnose many types of muscular diseases in Turkey at that time. Unfortunately, there are very few specialists who thoroughly understand the  different types of muscular diseases in Turkey. I lost my two brothers because of wrong treatments, ill-equipped doctors, and lack of basic equipment such as a BIPAP machine.  Also there was no proper Intensive Care Unit at the State Hospital in Tatvan.

The majority in our society cannot understand the scientific field and what it is like to live a quality and independent life. For patients to live independently is also big obstacle for many patients and their families.  Many patients, because of lack of knowledge, are unable to follow the instructions given to them by the specialists. For that reason I could not rescue my brother, who had respiratory troubles.  He was 30 years old, and like me he had many dreams but in the end I lost him.

Because of my experience in living with a muscle disease, I have dedicated my life to help those with muscular diseases. I now work for  the Board of the Muscle Disorders Association of Turkey.  I feel desperate every time I receive a phone call from a patient’s family and hear that they are in the Intensive Care Unit because I know the results that they will experience.

From living and learning here is what I have observed about the The Plight of People Living with Muscular Disease in Tatvan, Turkey:
Muscular dystrophy patients cannot obtain the knowledge to live a more qualified and humane life. Many are poor, cannot read, and are unable to leave their homes. They cannot receive basic medical help or any physical therapy they the would especially need.  All these basic needs should be solved effortlessly within a social state but it is not the case in Turkey.  Most of these patients are unemployed, although they have made all the effort that was in their power for many years.

For now, some rights that already were established for those with disabilities were taken back silently. For example, three months of financial assistance to thousands who are disabled were discontinued abruptly.  I think my turn will also come soon. We are mostly society that believes in fate.

There are very few neuromuscular disease doctors in Turkey.  Additionally, it is very difficult for patients to contact a specialist to learn more about their disease. Most patients do not have knowledge about their disease; they traveled from very far and then wait for hours in front of the poli-clinic, and then are told that there is no treatment.  Most return home with despair, beaten down, depressed, and hopeless.
 Patients who have financial means, however, and have a little bit knowledge try to learn more about their disease, yet they can not get sufficient knowledge. Patients in Turkey need to live as independently as possible and need to get appropriate support and knowledge about neurology, cardiology, physiotherapy, genetics, orthopedics, dietetics, and finally, psychological help.
You may contact Fatma here for the Turkish version of her story.  

Happenings in the GNEM Community:
1.  The Neuromuscular Disease Foundation (NDF) has launched a page "Rare Reality" on their website where GNEM patients are encouraged to share their story, here is the link.

2.  GNE Myopathy International (GMI) has recently  conducted a 2 day conference on the Perspectives on GNE Myopathy, for updates check here.  http://gne-myopathy.org/

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