There are over 400 forms of short stature, the most common being the so-called skeletal dysplasias associated with deformities of the skeleton and bones.
Initial diagnosis of the disease and periodic diagnostics related to the prevention of unforeseen complications, as well as supportive physiotherapy for children and adults with short stature in Bulgaria are not covered by the state.
People with short stature in Bulgaria pay for consultations with specialists and medical devices for operations, which, due to the specifics of the disease, are common among them.
The national organization "Little Bulgarian People" was founded in 1996 by a group of short people, united by the desire to work together for change and a better life in Bulgaria. Since 2007, engineer Svetoslav Chernev has been elected as its chairman, who leads the association to this day. The organization comprises over 160 members. Because they are spread across the country, site visits are periodically conducted from a mobile center, consultation and support are provided, and regional and national meetings are organized.
On the eve of December 3, the World Day of People with Disabilities, the organization "Little Bulgarian People" will submit its requests to the institutions with the attached recommendations from Germany and Spain, they will seek assistance from the national ombudsman and the Commission for Protection from Discrimination, it became clear during a discussion held in Sofia about the problems of people with short stature.
Mr. Chernev, what are the most significant unsolved medical problems for people with short stature in Bulgaria?
- The little people in Bulgaria have quite big problems, the most important of which is their treatment and diagnosis. This is the case of Maria Pesheva from Petrich, because the Bulgarian he alth care does not provide her with funds for artificial joints, she is not with us now because it is very difficult for her to move. The state pays a small part of the cost of these joints, the rest must be paid by it. Living on a small disability pension, Maria is unable to purchase the artificial joints she so desperately needs. He can't even take out a loan. She needs BGN 10,000 for both joints. Our bone system is specific and
standard joints are not suitable for small people
It's good that the Military Hospital in Sofia took the problem to heart, consulted Maria and now she has to undergo treatment with them. Access to specialists for little people is very limited in our country, and this will hardly change.
What specialists do you need?
- Periodically we need to consult orthopedists and neurosurgeons to monitor our condition so that irreversible complications do not occur. At the moment, this cannot happen in our country, because the standard phrase is: I have no directions. However, when you manage to get it and go to the neurosurgeon, he sends you for an MRI, where they explain to you that you don't need it. And that's how you lose the right to review.
These are part of your medical problems. And is the medium accessible to you?
- The infrastructure is unavailable to us. A large part of the little people stay at home because they don't have a job. When we read the ad in the newspaper and they schedule us for an interview, when they see us, they say that the position is already taken. People look down on us. When this happens to a person once, twice, three times, he loses incentive and motivation to even apply again. These people fall into a specific psychological state and lose the will to fight.
The other problem is that many of us do not receive from the state some guaranteed minimum income - in the form of a pension for example, so that they know
that at least their bread is guaranteed
In addition to the big city, there are also them in the villages, where there is no livelihood. It is true that among them there are also very well-realized professionals - engineers, doctors. If others like them are given a chance to show what they can do, they will be much more valuable, not only to themselves, but also to society.
We were amazed by the fact that little people have to go through TELK during a certain period, and in practice such a person cannot grow between two commissions…
- The funny thing is that there are many such cases per document. Our organization has helped to solve some of them, the media has also taken part. The last case was in Varna. Then journalists helped a person with a similar problem to forget about fear and directly ask the commission itself if he has grown up and whether it is possible, in their opinion, to grow up from now on. The commission decided to give him a pension for life. But this happened because there was a public response, and the man had the courage to face his previous fears.
Lately there has been talk of orthopedic surgeries that, sorry, you can grow…
- This is another madness in the public space in Bulgaria! When they cut your bone, they give you some time to fill the gap - that can happen. But how will they lengthen your fingers, will they break them one by one?! Scars remain from the operations, then plastic corrections follow. We don't need this, it's not a solution -
we will only endure more pain and humiliation
There is a fundraising campaign for a child from Varna. Nothing wrong, parents want to try, doctors have promised them. They will sell their house, stay on the street so that his limbs can be lengthened so that the little boy can become like the other children. This, in my opinion, should not happen, it is better to treat it than to cut it. Yes, I too have felt rejected by society, but I got over it.
Can you withdraw your pension money at an ATM?
- No one can - unless we ask a bystander to do it for us! There are no low ATMs, we are charged separately for withdrawals from another bank. The problems here are intractable.
Venera Velikova:
If you have money, you get treatment, otherwise you wait - Venus, you are one of the "lucky" ones to visit Germany and get to know their good practice in the state's relations with small people. What impressed you the most? - Our German friends are amazed by what is happening to the little people in our country. There is a result from what we have seen. We stayed in Bremen for 5 days in their center for small people - I strongly hope that we can build such a center in Bulgaria as well.
We had meetings with doctors, with psychotherapists. A doctor asked us a question about how things are with us in Bulgaria - we explained to her that if you have money, you get treatment, otherwise you wait. Then he asked us where the He alth Insurance Fund was during our treatment. We didn't have an answer for that.
What is their center?
- The apartment is made according to our dimensions, for small people, it has all kinds of amenities. Equipment, kitchens, toilets, bathrooms - everything is commensurate with us. Many people in our country will say that this is a luxury. No, it is not a luxury, because a large number of small people, due to their specific physical data, find it difficult to take care of themselves. All the little people there work, they feel complete, independent.
