Table 1 insert here
The participants' mean age and standard deviation are (34.50±7.83; Min: 17; Max: 53), the mean and standard deviation of the subjects are 2.23±2.36; min; 0, max; 7. The participants are mostly men. Half of the participants are married, and half are single. Participants mostly have a primary education level. Most of the participants do not work. Participants primarily reside in the city centre. In addition, nearly half of the participants declared that their income is below TL 2000. This study investigated the answers to the following six basic questions.
1. What do you know about your disease?
2. What do your family and society think about you? Can you tell me about your experiences?
3. What kind of problems do you have in health services? Do healthcare professionals know about your disease?
4. How were your diseases affected during the Covid-19 process? What are the problems you have experienced due to Covid-19?
5. How does the rehabilitation program affect your disease? What kind of problems did you experience in getting rehabilitation during the Covid-19 period?
6. What are other opinions, thoughts, and suggestions you want to share in general?
1. What do you know about your disease?
Considering their answers to this question, it is found that patients are generally aware of their disease and its effects. Although there is no definitive diagnosis of the disease, it is seen that some treatments and rehabilitation methods try to slow down the course of the disease.
According to one participant,
I know that there is no definite treatment for my disease. I try to control symptoms with medications and rehabilitation. They also help to slow the course of the disease. The effect of muscular dystrophy on people depends on the type of disease. Many patients get worse over time, and some patients may lose the ability to walk, talk, or look after themselves. This is not a case experienced by everyone. Some people with muscle disease may live with mild symptoms for years. I have heard that there are more than 30 types of muscle disease.
According to another participant;
I have been carrying this disease all my life. I have great difficulties walking, sitting, standing, climbing stairs, and lifting things, especially muscle weakness. My disease continues in the same way. It is always the same, neither progressing nor regressing, and it affects more in cold weather. I can also feel it in every part of my body. It is slightly better with Tegretolcr 200. It can make a change, not a noticeable recovery. When I leave using Tegretolcr, it becomes the same as it used to be. My older sister has the same disease. However, her children have had no noticeable symptoms so far. My other older sister does not have the disease, but her three children do. I think children have this disease at a higher level than us. I have a 1-year-old daughter, I have not had her tested yet, but as far as I have observed, she seems to have this disease as well because she sits and walks slowly and loses her balance very quickly.
According to another participant;
We have muscle disease. I know that our muscles are not strong enough, so this causes negative effects such as heart, blood pressure, and joint pains and does not allow a quality life.
2. What do your family and society think about you? Can you tell me about your experiences?
Almost all of the participants gave similar answers to this question. Participants stated that society humiliates, curses, and considers them disabled. They stated that they could not go out in public because of social humiliation and contempt and face tragic situations. Some participants stated that they could not get married due to this disease, while others stated their spouses abandoned them.
According to one participant,
I am sometimes mocked and jeered in public. I have trouble walking. I often hear people saying that God has damned him.
According to another participant,
They see us as disabled. They always see us as if we need someone or something and our disease is the plague. Due to this disease, families with the same surname have changed their surnames as they are ashamed of us.
According to another participant,
They see me as if I am cursed, and they do not even give me the right to speak because of my disease. I do not talk to anyone, and I have locked myself in the house as I am mentally depressed. I am scolded by society as if I do not have a mind or intelligence, as well as my arm and leg weakness, and they make fun of my walking style. I am grieved.
3. What kind of problems do you have in health services? Do healthcare professionals have knowledge about your disease?
The participants stated that they have problems accessing health services, and health care professionals have insufficient knowledge about rare diseases. They also stated that there is a lack of specialist personnel.
According to one participant,
It is very difficult for us to access treatment in terms of health services. It is also very difficult for us to be transferred to hospitals financially and morally as we usually have limited mobility. When we arrive at the hospital, we cannot get most of the treatments or controls we desire because it is very difficult to find doctors, nurses, and health care professionals trained in this field. Many doctors, nurses, and health care professionals are not even aware of our disease. In other words, they have very poor knowledge. Especially our family physicians, home care services doctors, and nurses have very insufficient information about our disease.
According to another participant,
Doctors' knowledge is insufficient in some cases as my disease is one of the rare diseases. I have difficulties in the hospitals because the number of wheelchairs is low. No one knows anything about my disease except my doctor. My doctor follows up on my disease through regular checkups.
4. How were your diseases affected during the Covid-19 process? What are the problems you have experienced due to Covid-19?
The participants stated that the lockdown due to the Covid-19 pandemic caused progression in their diseases. They stated that the limitation was already existing in their ability to move increased as they had a problem accessing rehabilitation and regular medical examinations due to lockdown. They experienced not only physical but also mental problems.
According to one participant,
I have not contracted Covid-19 yet, but the restrictions caused unexpected progress in my disease. I am no longer afraid of contracting covid-19 as death will be a profitable outcome for me rather than living this life with this suffering.
According to another participant,
I cannot work due to disease, so I have no job opportunities, and there is no one to work with at home. I have to work at home even in this state, but I still cannot work. I am afraid of leaving my children behind if something happens to me because of Covid-19.
5. How does the rehabilitation program affect your disease? What kind of problems did you experience in getting rehabilitation during the Covid-19 period?
The participants stated that rehabilitation has a severe effect on reducing the effects of their diseases, but they are limited due to the epidemic.
According to one participant,
There is no medicine for this disease; rehabilitation increases our motivation and makes it easier to fulfill our needs in daily life. Even if it does not entirely cure my disease, it stops progression slightly. However, we could not get treatment due to Covid-19; we always had to stay at home, our situation got worse.
According to another participant,
During the Covid-19 process, my disease was affected so much that I became unhappy mentally. My treatment was delayed. I did not receive physical therapy. I could not go to my muscle diseases specialist, and my tests were delayed.
According to another participant,
Rehabilitation is essential for us. It is so good for me. However, it became impossible for us to go to rehabilitation centers during the pandemic. This process was much more difficult for me as I did not have the opportunity to receive physical therapy at home where I live.
6. What are other opinions, thoughts, and suggestions you want to share in general?
Patients generally stated that they want increased physical therapy opportunities and more social relief because they need to eat healthy foods, but they have financial impossibilities. Participants want to live in dormitories designed for them, with rehabilitation and nutrition facilities and offered by the public. They want to benefit from social reliefs and care services for the disadvantaged ones as they are in the disadvantaged group.