Photograph of Dr. Suleyman Kus
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Dr. Suleyman Kus

My Story

I was born in 1977 in the city of Antakya, Turkey and was raised as the only boy in a family of  5 children. Currently, I am working as a family doctor at a public health center in Antakya.  I do not think that I am a good writer however, I feel like my story, as a doctor would be helpful to others, because it took twelve years of experiencing symptoms of GNE Myopathy  before I was able to get a confirmed diagnosis. One would think as a doctor, I would have been able to  get a diagnosis sooner.  I think I can describe my GNE Myopathy life in three parts.

Pre 2005, Physical Independence and Relatively in Good Health

I was never  interested in participating in sports since my childhood. There was no issues in my appearance which would have indicated any physical problems. Now, I understand as I reflect back to those days, why my muscle strength was relatively weaker than my friends, I must have been experiencing some early symptoms of GNE Myopathy.  I realized that I always stood back in situations which required too much physical strength. For instance, I chose  positions which required less strength such as a goalkeeper or a defender when I was  playing soccer.  I could not jump as high as others when playing basketball.  In running, I was usually the last one to reach the finish line and I could not climb the higher branches of a tree which my friends were able to climb.  As I mentioned, since I did not have any visible problems in my physical appearance, I thought that the main reason for all these issues was either, I was not the athletic type or I was less skillful than others in physical activities.

2005 to 2017 A Period of The Unknown

My first symptoms of the disease started to show up in a period when I was extremely busy as an assistant doctor and this is when I noticed my movements started to slow down.  I was becoming tired very quickly while climbing up the stairs in the hospital. These were the same steps I used to climb up before without any difficulty.  During this same period, I also noticed the way I was walking had changed and when I needed to run I found it was much harder. In addition, I was unable to float when I went to swim since I was not able to move my legs fast enough.  To make my situation worrisome, I started to fall down at times while walking.  After experiencing these symptoms I decided to see a neurologist friend of mine who was working at the same hospital.  As a result of my  physical examination and bloodwork, I was given an electromyogram (EMG) test because my Creatinine Kinase(CK) level was high.  Based on these tests, my initial diagnosis was Peripheral Neuropathy.

My doctor ordered some more detailed rheumotologic and metabolic tests because he wanted to understand more about my initial diagnosis of Peripheral Neuropathy.  Even after all these  tests and procedures  I was not able to get a definitive diagnosis. Because GNE Myopathy is a slowly progressive disease, there was no significant changes in my physical ability. Most GNE Myopathy patients would clearly understand what I mean.  On an average of every six months I was having difficulties doing some actions which I was comfortable doing before. Now, I understand that this was due to the weakening of my muscles.  I started to think that my Peripheral Neuropathy diagnosis was not correct and I suspected that I have a different disease. I consulted some well-known Turkish professors who are neurologists in Izmir and Ankara.  I was tested for the main common forms of muscle diseases and all the results came back as negative .  After all these tests, my second possible diagnosis was Spinal Muscular Atrophy (SMA) . It was around this time that I met with my future wife Meral and little later we decided to get married despite my diagnosis. We continue to have a great relationship and a happy marriage. Meral always supports me in all parts of my life, both at home, in my various activities and at work. Nevertheless, these were very tough times for me and my family, my friends, and my wife Meral were always very supportive.  I am very  appreciative for their constant support. Over time,  I was getting used to dealing with this disease, however, in 2016 my youngest sister started to show similar symptoms like those of mine.  It seemed like this was certainly an “undiagnosed” genetic disease. Later, my sister got a detailed genetic examination from a different hospital.

2017  to Now – Focus on  Living and Learning About GNE Myopathy

I clearly remember the time when I saw my genetic test results, I was shocked as the diagnosis result stated “Nonaka Myopathy”.  This diagnosis was not familiar to my neurologist nor myself.  After a brief internet search, I found another “Hereditary Inclusion Body Myopathy” (HIBM), now officially known as GNE Myopathy. HIBM sounded familiar to me, a condition I learned from my university classes. Once I found out about my confirmed diagnosis, I immediately contacted Neuromuscular Disease Foundation (NDF) and also a private GNE Myopathy Patient Support Group on facebook.  After finding out that I was not alone and that there are many patients like me, my feeling of like “a leaf blown in the wind” eased up. I felt very encouraged to learn that there were researchers studying GNE Myopathy and working to find a treatment.

In 2017, I decided to attend the NDF Symposium  in Los Angeles, California.  At this Symposium  I listened to presentations given by many well-known professors who have been studying GNE Myopathy for many years . At an NDF patient ceremony, I became a Certified Patient Advocate for Turkey.  I was inspired by the NDF Symposium in Los Angeles, so I along with the support of NDF and others decided to organize a first GNE Myopathy Patient Day in Istanbul,Turkey in May 2018. Many Turkish patients attended this event and had a chance to hear about the details of GNE Myopathy from  notable doctors. In addition, I created a Facebook group named “HIBM-GNE MIYOPATI TURKIYE’’( Since then I have been contacting patients, trying to find potential undiagnosed patients, and educating people about GNE Myopathy.

Presently, I go to my  work with the assistance of my wife.  I have designed and adapted my office space to accordingly accommodate for my needs and I find I can work without any major problems.  When I go outside my home I use a bi-lateral ankle foot orthoses (afo) to assist me with stability. Lately, I started to use a tripod walking stick and an electric wheelchair when I travel.

I do not remember where, but once I read an article which inspired me very much. It briefly described life something like this, we carry a piggy bank with us from birth until our last breath, in this piggy bank we collect the happy moments we feel. On our last breath, the fuller our piggy bank is, the more meaningful life we ​​have experienced. It is of course very difficult to live with a chronic muscle disease. But regardless, of our situation, we should try to catch the moments when we feel happy as long as we are able to breathe. GNE Myopathy has taught me to be more patient and to live with empathy. This progressively chronic weakening disease has taught me to make plans that will increase my happy moments and not to postpone being happy and completing important things timely. Moreover, I am reminded of the urgency of the choice to be happy and to be happy now, and in each moment as I go through this process.  For me, there is no other way to live this life !!

How to reach Suleyman:

Suleyman is a part of the GNEM Turkey Support Group on Facebook

You can e-mail Suleyman by using the “e-mail” option on the CPA main page