Dear Dr. A. Zahid Akman,Today, baby Irmak who is an SMA patient and living with the assistance of respiratory device was treated in the program named “joy of life” at STV. We have watched the program since the mother, Ms. Sevda, has told us previously that she will be in the program.  However, wrong messages have been sent to the society by this TV program.

Sayýn Ýlgililer,

    Daha önce size bir milletvekili aday adayýnýn gazetelerdeki bir haberi üzerine engelli bir birey olarak düþüncemi yazmýþtým. Hatýrlatmak için ek te bu yazýmý da gönderiyorum.
Biz, Spinal Müsküler Atrofi tipli bir kas hastalýðý yaþýyoruz. Hastalarýn ve hasta ailelerinin oluþturduðu SMA GRUBU çalýþmamýzla, ilgili olabilecek yerlere sesimizi duyurmaya çalýþýyoruz. www.smagrubu.com sitemize bakýldýðýnda konumuz anlaþýlýr. Biz SMA hastalarý seçim öncesi oluþturulacak yeni düzenlemelerde DAHA ÇAÐDAÞ BÝR YAÞAM ÝÇÝN SEÇÝM ÖNCESÝ TALEPLERÝMÝZÝ iletmek istiyoruz.

    I have a type of muscular disease. As you may know, the muscular patients are the people from various impaired groups and with progressive diseases.

    They present the required arrangements to these patients which is necessary throughout their lives in the developed countries and they rehabilitate them. This situation is limited with the economical state of the family in our country. Rehabilitation service is not furnished to this type of patients. Therefore, the treatments seem like the only way for us since the patients in our country can not take part in life, they can not undertake the handicaps that their disease brings to them while the patients in those countries follow a path under control of the doctors without applying to alternative treatments. If I have to give an example from myself, I’d like to participate in such events when I am very sad or when the effects of my disease increase. This is valid for the other countries who are in our position. I guess that may be the reason why the first experiences appear in this kind of panels. The ministry of health and the concerned associations in our country must be more sensitive towards this issue because of its sensitive case.

Subject: Rehabilitation in SMA ( Spinal Muscular Atrophy) type patients.

Person who performed the study:  SMA GROUP      Adres: www.smagrubu.com

    Aim: To communicate the subject of the rehabilitation of SMA patients, and to communicate the expectations of the patients from the organizations and government to the concerned authorities. To bring up the subject during the Rehaistanbul event.

Hi to all,

    First of all, I’d like to thank to the Impaired Trust for making us meet with you and hosting us.
The subject of our panel is our lives and problems as the SMA GROUP.

    I’m Fulya Öðretir. I am a spinal muscular Atrophytype muscular patient. My disease has appeared when I was 1 year old. I have been on the wheel chair for 34 years. I have been experiencing respiratory complication for 7-8 years. As a result of the tests that are executed at the Chest diseases department, they have said that I need respiratory assistance at night time from BIBAP machine since the capacity of my lung is low, but I can not receive this assistance since I wasn’t compatible to the machine at the test executed (Bibap is a device that roundly blows the air in the room to the lung with a mask). Currently, there is no exactly rehabilitative treatment that is applied to us. There are studies in the direction of gene treatment that we have been waiting for years since 1988. But it is said that they still couldn’t manage to ensure the gene that is given from the outside to go to the place that is required. Some of the epilepsy drugs are recommended for the last 1-2 years which are claimed to increase the protein that is lacking in our body. These are the drugs that are being tested.

Sayýn ilgililer,

    Biz sma ve dolayýsýyla kas hastalarý hastalýk tipimize göre çeþitli engellilik durumunda ve hastalýðýmýzýn getirisi olan saðlýk sorunlarýyla yaþýyoruz. Genellikle daha çocukluk ve gençlik çaðýnda hastalýðýmýz ortaya çýktýðý için genelde eðitimimizi sürdüremiyoruz ve isdihdam edilemiyoruz. Yani  yaþam boyu ilerleyici bu hastalýðýmýzla ve hastalýk tipimize göre çeþitli engellik durumu yaþarken yaþamýmýzý kazanmak için genelde bir iþimiz olamadýðýndan maddi olarak ta ailelerimize baðýmlý olarak yaþýyoruz. Hastalýðýmýzla ilgili gidiþatta týbbi destek tedavilerine de ( Fizik tedavi, skolyoz tedavileri, solunum terapileri, akciðer kapasite takibi ve solunum desteði gibi.)  ihtiyacýmýz var.

Dear President Dr. A. Zahid Akman,

    I have a genetic disease which has occurred when I was 1 years old and I have been living on the wheel chair for 34 years. As you may understand, we can not participate in the social life because of the condition of our country. Therefore, the media is very important for us. Our time passes by watching TV, listening to radio and reading newspapers.

Merhaba,  

    Ýnternette mail adreslerinizi gördüðümde grubumuz adýna da sizlere yazmak istedim. Bir genetik hastalýðý yaþayan biz hastalar 2 yýl kadar önce SMA ( Spinal Müsküler Atrofi ) GRUBU çalýþmamýzý oluþturduk.

The way to cope with the problems is to define them. As a member of the SMA group, I have participated in the symposium that was executed in Caddebostan Culture Centre on November 19, 2006, Sunday, as a listener. The family training seminary program for the disabled children in the scope of Tübitak Project of Hacettepe University, Physical Treatment and Rehabilitation Academy was as follows; Prof.Dr.Fzt.Ayþe Karaduman has informed us on the subject of disability and rehabilitation. She has told us what she had done to determine the requirements, to give info-training and to spread the info that was given during the symposium. She told us that we shouldn’t bring our disability which is diagnosed with correct diagnosis, to a point which it blocks us with limitations in order to be able to cope with our problems. She said that being disabled shouldn’t mean being handicapped, disability is the diagnosis of the disease; however, handicap is not taking part in the society because of some unsuitable conditions.