My name is Aisha. I am 36 years old and suffer from a rare progressive disease called CMT, a disease that disrupts the motor function, mainly of the limbs.
A Mysterious Disease
Disease symptoms were first manifested when I was only 12. During the first years, the disease progressed at a slow rate, and at 19 my hands were also weakened. The physicians could not provide me with a diagnosis and referred me to a variety of exams – one was a muscle biopsy – after which I could not walk for several months. Unfortunately, this exam did not lead to any diagnosis, and I remained in the dark.
The CMT Organization
After many years of suffering, coping with endless exams and medical experts, I decided to adopt positive thinking, be content with what I have, and love life despite all. It was only recently that I discovered that my illness has a name – CMT (Charcot-Marie-Tooth). It happened while I was shopping for shoes in Jaffa and met a woman named Miriam, who told me about CMT. Since then, I have been in touch with organization members through an incredible WhatsApp group, and feel fortunate to receive much information, updates, and share.
In recent years, due to the progressing illness, I mobilize using a motorized wheelchair. I also issued a driving license recently and bought a new car – it is a thrilling moment for me since for the first time in my life I was able to leave my home independently. My family members support and help me a lot. They never leave me alone nor give the feeling that I am different or ill. My brother even equipped me with a lowered kitchen so I can cook using my wheelchair. I have another brother and two sisters with CMT, but thankfully they are in a better condition than me.
The important message I would like to convey to the world is that everything has a reason, and there is no negative side that does not include a positive one as well. Do not stop your lives! Enjoy them, do the things you love, and always remember, every problem has a solution.
My name is Eden and I suffer from a rare neurological disease named CMT. The simple task of writing this sentence is a great challenge for me, though I feel a great sense of significance in revealing this illness and raising public awareness of the disease.
What is CMT?
CMT is a neurological genetic progressive disease that disrupts motor functioning. Damage is mainly exhibited in limb atrophy. This is the reason for the deterioration in the ability to perform simple daily tasks and the need for a wheelchair to mobilize.
Revealing my illness was possible thanks to the diagnosis of my family relative. I was always a bit different as a child, and my physical abilities disclosed the fact that something was wrong, though physicians failed to diagnose me, and I never received proper treatment. It was only when my relative was diagnosed that connection was made for other family members. My brother, father and I were then diagnosed.
I always had difficulty exposing my disease to the world. But I now understand that in order to help others discover and cope with the disease, awareness must rise. Many people suffer from CMT and are unaware of it. And there are too many physicians and experts who know nothing about CMT nor its diagnosis, thus preventing people from proper treatment.
Life With CMT
Unlike other neurological diseases, CMT is not life-threatening. However, life with CMT requires frequent adjustments to physical deterioration and the fact that simple tasks become impossible.
My family and I were always fortunate to have supportive surroundings to carry out such adjustments and maintain our well-being and maintain a high quality of living, though I believe everyone deserves well-being.
My name is Tikva Malul. At the age of 39 I was diagnosed with CMT, and since then I have been using a wheelchair.
To be honest, I had a rough start with accepting my disease. At that time my youngest son was only 3 years old, an age in which children need a present, active mother, one that can hug, play with or provide young infants’ needs.
Adjusting to the new condition lasted a year. At this period, I realized that after all, I must live life and cope with my disability, and if I cannot help myself, my surrounding will not be able to support me as well. I also realized that while falling into darkness unable to lift myself, my entire four-kids family also drags behind. My family was also suddenly required to cope with my new condition – a mother in a wheelchair.
Understanding my new condition and its implications, I began a process. I knew that once I will successfully uplift myself, I will also assist everyone around me – and this is exactly what happened. I fought for my independence in many methods and battled to function within my capabilities despite my restrictions. It was extremely important for me to become a role model for my children, prove to them that life lies ahead, and we can overcome and outgrow every pain. It is not easy, but looking back, it is definitely possible.
Desire Paves the Way
When asked about my status, I answer 4X4X4 – a mother of 4 children, grandmother of 4 grandchildren, and I drive 4 wheels. In the past five years, I have volunteered daily in a healthcare center of “Clalit”, since I believe that you can achieve all you want, even less trivial things, such as skydiving.
Hello, Nice to meet you. My name is Ofir Dahan.
When I was one year old my mom noticed that I was lacking basic capabilities performed by babies my age. After many medical exams, the doctors notified my parents that I was born with a neurological disease called Charcot-Marie-Tooth disease. My stunned mother asked: “Is this a disease or a name of a sweet dessert? Are you a physician or a waiter?”. And my dad: “What kind of an ice cream does it come with? This Marie-Tooth sounds good”. The physician then answered: “It is a serious disease with muscular neuropathy and muscular dystrophy symptoms. My dad’s response was: “And there is no ice cream side dish?”.
How did it affect me? The physician explained to my parents that being ill, I could never grow to be independent. My father then replied with another joke, but my mother asked what she had to do for me to have a chance. The doctor recommended swimming and physiotherapy. My mother immediately enrolled me in a swimming class, and I was the only 3-year-old who was a permanent country club member.
I was medically supervised from the age of 3 to 18. Once every three months I would visit the hospital in Jerusalem. My medical exams included X-rays and occupational therapy tests such as using utensils to eat, walking up the stairs, shirt buttoning, shoe lacing, etc. I was tested every three months. Once, I failed at walking down a rail-free staircase. so, as you can see, I didn’t alway pass with flying colors, but rather ended up with black-and blue knees.
As you can imagine there was no re-do, but rather a long period of hospitalization.
There is no second make-up exam. There is only hospitalization in the third internal medicine division.
Life was superb. I had a role I really desired ever since I started studying economics. I rented a house – just me and my dog Chili. I went out and enjoyed life, but something was still missing – a romantic relationship.
A Physical Disability Is Not Necessarily a Limitation
When I was 33 I posted a Facebook post starting my journey to search for my significant other. I thought that being in a relationship and employed in a decent job, could make me happy. I realized that I was seeking my identity and a sense of belonging. I quit my old job knowing that I have a mission to raise awareness for discrimination and fight for equal rights of the disabled, for an accepting equal society towards the handicapped.
Today, at 39, I am in a relationship, about to marry my partner Etti and accomplish my dream of raising a family. I also have a whole stand-up show about life with the disease and being disabled.
My name is Tikva Ben-Hemo, I am 58 years old, and I work as an elementary teacher, and I was diagnosed with CMT 7 years ago.
It all began about eight years ago – people started making comments and asking what happened to my leg. I didn’t feel anything different but because of my friend’s concern I contacted my family doctor for further investigation. The doctor referred me for a further nerve-conduction investigation, and the results were frightening: an extremely severe motoric and sensory axonal polyneuropathy.
CMT and Genetics
CMT is a genetic disease. I am one of nine siblings, and despite the fact that both my parents are healthy, one of my brothers also has CMT. My brother and I are treated by a well known neurologist.
Life With CMT
For the first seven years following my diagnosis, there was no substantial change in my daily routine – both daily activities and as a gym teacher, though during the last year my condition significantly deteriorated and I can now only walk while using a dictus band or splint, for short distances only. For now, I have yet to be recognized by the National Insurance Institute of Israel (“Bituah Leumi”) and continue to work as a physical education teacher, but unlike in the past, I refrain from making sports demonstrations. Sometimes I lose my balance due to limb weakness, mainly in my left upper body. You can say that my functioning is 100% and I am capable of performing all my daily tasks – accommodate guests, cook, and live on a fourth floor with no elevator.
In light of my name – Tikva (“hope”) – I am very hopeful that one day a CMT cure will be discovered.
My name is Shir, and I am a mother of a 16-year-old who is coping with CMT.
Eden was born perfect, with entirely normal legs. Though one day, at the age of 12, she sat on the couch, her legs stretched forward, and complained that she was in pain. Yaron (my partner) and I glanced at her legs and did not understand what we were seeing: her toes were tightly closed, and her ball of the foot was swelling. Our initial instinct was to blame Eden – we were sure that this is the result of her constantly wearing flip-flops, that her toes shrank because of the grip motion and can not be released. We began the journey searching for answers and solutions.
A Long Journey to Discover the Disease
The journey lasted three whole years, in which I tried to comprehend what happened to my daughter’s beautiful legs. We visited orthopedic experts and this long ping-pong lasted over years. One day, indifferent to the disease, Eden broke her shoulder and needed an X-Ray. During the orthopedic visit in which the broken shoulder was diagnosed, I also insisted to get some answers concerning Eden’s legs. The orthopedic answered that this is the first time she had seen anything like this, and referred Eden to her colleague, a neurological doctor from Assaf Harofeh Medical Center – finally, salvation has come. The neurologist immediately knew this was the CMT disease.
Life After the Diagnosis
Eden is a happy, joyful kid. She copes with the disease with much courage and does not allow it to affect her life: she goes out, walks, and even attends the gym. Although she tends to fall a lot due to her instability, she continues to smile. Because of her young age, she refuses to wear unfashionable shoes or walk using “strange” splints that pop out of her pants. I hope that with time she will realize that her health should become her top priority. This is our journey.
My name is Adi Azar and I am ill with CMT.
When Slava Passed Away
Being sick, you always know things can worsen, but nothing could prepare me for the death of my beloved uncle – Slava. He was my only family member who was also diagnosed with CMT. While grieving, wonders and anxieties concerning my condition were constantly in my head. The voices were rough and daily. A few months later I met up with a close friend who asked me a question that still resides within me – “being occupied with death is completely comprehendible, but how would you like to live your life?”.
A Turning Point
For years I professed in the field of education. Ever Since I began focusing on my life and being less concerned with death, I made small steps that helped me focus on other directions, such that are more accurate for me. I learned musical production software and graduated the full musical production program in college, but always carried guilt for leaving the education field. A year ago, my cousin gave me a present: a gift card to the tools workshop of “Am Sagol” organization, an organization for personal development and social engagement development. Despite many doubts, I decided to join the workshop, and I gained so much out of it. I suddenly realized that there is no reason for me to feel guilty about me concentrating on music and that I must place my personal well-being at the center of my priorities.
Learn, Dare, Accept, and Improve
About a week ago I completed my journey at “Am Sagol”, meeting incredible people and learning to live life 100%. Not more, and no less. I mainly learned the positive outcomes of me being able to dare, and that I should not be ashamed of my positive qualities, that I must provide myself with positive feedback daily, and take responsibility for the energy that I bring to life on a day-to-day basis. More than anything, I learned to accept fear, the difficulty of coping with the disease, acceptance of my weaknesses, and the will to improve them. I learned to set goals and achieve them.