Dear friends, acquaintances, and those who are hearing about me for the first time!
I believe I am familiar to many of you (I was featured on the TV show “Inglite aeg” and have appeared in articles in Tartu Postimees and MK-Estonia). My name is Natalja Šebunova and I live in Tartu city. Since 2000, I have been suffering from a disease called pansclerotic morphea. For more than 15 years, I have had ulcers on my legs, now also in the thigh area and on my arms. There is always a great risk of infection (the infection persists in the ulcers). The strain of microbe that lives in the ulcers is very resistant and must not enter the bloodstream. In recent years, I have been using a wheelchair.
Unfortunately, there is no specific treatment for morphea. So far, I have undergone treatments that are possible according to current medical knowledge and which can be called experimental, but unfortunately, they have not yielded sufficient results (I have been treated in Italy, consulted with several doctors in Germany, and received treatment recommendations, which have been applied in Estonia as far as possible).
At the end of February and the beginning of March, I was in Top Ichilov Hospital in Israel for two weeks for examinations and treatment. My trip there and the examinations were made possible thanks to the support of Sergei Astafjev! I will remember his great humanity and helpfulness for the rest of my life. He is a person with a very big and kind soul. I am also very grateful to the board of the NGO Naerata Ometi – Heiki and Kuno!
The hospital doctor’s recommendation was extracorporeal photopheresis, two procedures every month. I have only received those two procedures there, and that is all. Initially, the doctor advised doing the procedures for at least half a year to see their effects on me.
Unfortunately, the cost of two procedures is very expensive, about $11,000. There are also additional costs associated with traveling and accommodation in Israel.
Honestly, my life is just horrible. I am constantly changing my bandages, and have very strong pains. Since I move on my knees, ulcers have also formed there. I started taking antidepressants because I am very tired of panic attacks. Shaking in my hands, legs, the whole body. The worst thing is knowing that the treatment is available, but I don’t have access to it. Each bandaging is very difficult, and I am always sweating. I can’t sleep normally. I use sleeping pills and diazepam drops. Every night I wake up because something hurts somewhere. Compared to last autumn, I feel much worse now. In addition, my hemoglobin level constantly falls, and I receive blood transfusions.
In June, the NGO Naerata Ometi put my project up on their home page. We were very optimistic, and our goal was to raise money for bandaging supplies and to go for the procedure in Israel. We managed to raise money for buying bandaging supplies (my average pharmacy receipt is about 700 euros in one week; all bills have been transferred to the NGO). The necessary amount for going to Israel was missing. Donations were collected in June and July. Now I am in such a situation that I simply do not have the money to buy bandaging supplies. I am in a panic.
There is currently a difficult political situation in Israel, and physically going there is not possible. Fortunately, by next year, a photopheresis machine will arrive at the University of Tartu Clinic. It is not yet known when the photopheresis procedure will be available in Tartu.
In order to survive until then and not develop sepsis, I need financial support to buy bandaging materials. I am very ashamed to ask for help, but without your support, I cannot bind the wounds, and it will end very badly.
I am very grateful for every euro!!!! I wish you all strong health!