Dear Friends,
At the end of last year, Natalja reached out to us for help. She is suffering from a rare and severe disease called pansclerotic morphea. This young woman has had to abandon her doctorate due to her ailing health. Her days pass painfully, constantly changing bandages, as her body is covered with ulcers that do not heal. She has been seeking treatment options for years and has finally found a hospital in Israel that has promised to help her, but the cost of the treatment is beyond Natalja’s means. Here is her plea for help:
“My name is Natalja Šebunova. I am 35 years old and I live in the city of Tartu. Honestly, this appeal did not come easily. I apologize for the shocking images of my ulcers in my medical history, but this is the situation 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, now also in the thigh area and on my hands. There is always a high risk of infection (the infection in the ulcers persists). The strain of bacteria living in the ulcers is highly resistant and must not enter the bloodstream. In recent years, I have been using a wheelchair.
Unfortunately, there is no specific treatment for morphea. I have been given treatment to date that is possible based on current medical knowledge and could be called experimental. Unfortunately, this has not yielded sufficient results (I have been treated in Italy, consulted with several German doctors, received treatment recommendations which have been applied to the extent that is possible in Estonia).
By now, I have become severely disabled. On December 20, 2020, a story about me, titled “In the Time of Angels” (“Inglite aeg”), was made for the channel TV3. Money was collected for buying bandages and medicine: (https://play.tv3.ee/clips/inglite-aeg-natalja-lugu,clip-2552037).
I also found out that there is the Top Ichilov clinic in Tel Aviv, Israel, and Dr. Tal Zaale working there. I had a video consultation with him and was invited there. Unfortunately, the borders of Israel were closed for a long time and there was also a virus outbreak. TV3 allowed me to use the money (a total of about 5,000 euros) for travel to Israel with my caregiver.
On 04.02.2022, we consulted with Dr. Tal Zaale in Tel Aviv. The most important thing was that the doctor said to me: “We can help you!” These words were most important, as I was very afraid that the answer would be NO. Doctors in Finland, Turkey, Italy and Spain responded that they could not help me in any way. Treatment in Tel Aviv is my last chance.
At the end of February this year, we consulted with Dr. Tal Zaale in Tel Aviv with a representative of the Naerata Ometi Nonprofit and I stayed in hospital for two weeks. The doctor found out why the disease is so aggressive and how to help the ulcers heal. Skin and tissue samples were taken from me. I received different injections and medications every day. Finally, a two-day extracorporeal photopheresis was performed on me. Examinations, bandages, gels, medications, and treatment cost a total of about 40,000 dollars. I had nothing left of the money donated to TV3; I only had a few thousand euros from friends and acquaintances. The remaining costs were paid by businessman Sergei Astafjev, who offered his help through the Naerata Ometi NGO.
Upon returning to Estonia and getting back home, we discovered that the results were very good. The wounds were beginning to heal gradually. According to Dr. Tal Zaale, to strengthen the body and allow the wounds to fully heal, it is necessary to perform extracorporeal photopheresis twice a month for at least one year.
Together with the team at Naerata Ometi NGO, we have been looking for photopheresis options closer to Estonia: in other European countries, such as Sweden or Turkey. At the moment, the only possibility for my treatment is in Tel Aviv. We have received information that next year, Estonia will also receive a new photopheresis device. Unfortunately, I don’t have time to wait that long. My body needs treatment today. All of this is very expensive and beyond my means. My skin is extremely dry and small sores keep appearing all over my body (some are superficial, others quite deep). It is always very uncomfortable and painful to move, sleep, even dress. Going to the shower is not easy: water causes pain because there are a couple of sores on the lower part of my back that have not healed for several months, and everywhere else are bandaged sores. It even happened that I slept for several nights on my knees or sitting – the skin on the lower part of my back and hips was so painful and inflamed. Since I usually move around at home on my knees (I use knee pads), my knee joints often hurt and are wounded. In such a case, I move like a dog, helping myself forward with my hands.
A couple of articles about me were published in the Tartu Postimees newspaper:
https://tartu.postimees.ee/7601668/uude-uurimajja-kolinud-natalja-sebunova-tahaks-vaga-elada-tavainimese
https://tartu.postimees.ee/7327650/haigus-on-votnud-noorelt-naiselt-too-karjaari-ja-jalad-siiski-ei-anna-ta-alla
In relation to the current situation both in our country and worldwide, it is very difficult to find money for treatment. Many people have a hard life and some have completely lost faith in charity. I myself have read about how people bought themselves a new car, beauty salon, cafe, traveled everywhere, etc. with donated money. In relation to the fact that treatment in Israel is my last chance to survive and make my quality of life a bit better, I am asking for your help to fund my treatment. Unfortunately, Israel is not a European Union member country and funding by the Health Insurance Fund is currently not possible. I understand that 2 weeks in the Israeli clinic is not the end, as there will be more treatment later. At the moment, the most important thing is to get started. During the two weeks there, all necessary and very important examinations were performed.”
Dear friends! In the spring, when we returned from Israel, the results were indeed noticeable. Now, however, Natalja has not received photopheresis for a couple of months and the results have once again worsened. We believe that it is possible to help Natalja and as a result of regular treatment, she will be able to get back on her feet. A young and capable woman fully deserves her treatment to be successful – then she could finally live a fulfilling life. If you have any possibility to financially support her treatment, we are grateful for every donation.
Thanking you all!
