Natalja needs our help. She is suffering from a rare and devastating disease called pansclerotic morphea. The young woman had to suspend her PhD studies because of her declining health. She spends her days painfully changing her bandages, because her body is covered with lesions that do not heal. She has been searching for a cure for years now, and she has finally found a hospital in Israel that is able to help her. However, paying for this treatment is financially not possible for Natalja. Here is her letter:
“My name is Natalja Šebunova. I am 34 years old and I live in Tartu. To be honest, writing this request for help was not easy for me. I apologize that there are shocking images of my wounds attached to the clinical case presentation, but that is my everyday reality and my life full of pain.
In 2000, I was diagnosed with pansclerotic morphea. For more than 10 years, I have had ulcers on my legs, and now on my thighs and hands too. There is always a high risk of infection (in the ulcers, the infection persists). The strain of microbe that lives in the ulcers is highly resistant and cannot be allowed to enter the bloodstream. In recent years, I have been using a wheelchair.
Unfortunately, there is no specific cure for morphea. Up to this point, I have been receiving treatment in accordance with the most recent medical knowledge, though it can be called experimental. Sadly, this has not been as successful as needed (I have been in treatment in Italy, consulted with many German doctors and received treatment suggestions that have been implemented in Estonia, as much as possible).
By now, I have developed severe disability. On 20.12.2020, I was the subject of the charity TV show “Inglite ajas” on channel TV3. They collected donations for me, so I could buy bandages and medicine (https://play.tv3.ee/clips/inglite-aeg-natalja-lugu,clip-2552037).
I also found out that there is a hospital in Tel Aviv, Israel called Top Ichilov and a doctor called Dr. Tal Zaale. I had a video discussion with him and I was invited over. Unfortunately, Israel had closed its border due to the coronavirus epidemic. TV3 allowed me to use the donation money (altogether about 5000 euros) for traveling to Israel together with my caretaker Irina Etin.
On 04.02.2022, we were there for a consultation with Dr. Tal Zaale in Tel Aviv. The most important thing that the doctor told me was this: “We can help you!” Those words were so precious to me, because I was terrified that they would just say NO. In Finland, Turkey, Italy and Spain, the doctors told me that they had no way of helping me. The treatment in Tel Aviv is my last chance.
Dr. Tal Zaale wishes that I start by admitting as an inpatient at the hospital for two weeks. They need to determine why the disease is so aggressive and help the lesions heal. We received information from the hospital that the treatment and inpatient services will cost about 40 000 dollars.
I have about 10 000 euros left from money donated to TV3, plus a few thousand euros given by my friends and acquaintances. Unfortunately, I cannot use this money, because then I would not be able to purchase bandages. Some of this money has gone to transportation and for the consultation (about 5000 euros). In Tartu, I received a single-room social housing apartment, which was completely empty – I had to purchase some furniture and electronics for daily use.
In the newspaper Postimees, a few stories about me have been published:
Regarding the current situation in this country as well as in the whole world on a larger scale, it is very difficult to obtain funding for treatment. A lot of people are having a really hard time, and some have lost faith in charity completely. I have read stories about people using their charity money to buy a car, beauty salon, café, travel everywhere etc. However, treatment in Israel is my last chance to survive and improve my quality of life at least somewhat. I am sincerely asking for your help in funding my treatment. I understand that 2 weeks in Israel is not the end of it all, and the treatment must continue afterwards. The most important thing right now is to get the process going.”
Dear friends! We believe that we can come together and make an important contribution towards financing Natalja’s treatment. This young and hard-working woman deserves to heal from her terrible condition – so that she is able to live a fulfilling life. If it is at all possible for you to make a contribution, we will be most grateful for every donation.