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Hello!
My name is Sveta, I am 17. In 2008 I graduated from high school and enrolled into Journalism department of St. Petersburg University. The college is a very exciting place, a "success territory", and it is incredibly interesting to study here.
Everything was going well, but suddenly I started having health problems. At first, my legs got covered with large bruises that would not go away for awhile. They really scared my mother. Then I started to lose my strength. In November I was told for the first time that I am pale, which did not sit well with me, as my skin color was always normal.
I have not paid much attention to all this and thought I was simply tired. However, I could not explain red spots and little bruises that appeared regularly on my body and did not look like allergy. After I left dentist with a mouth full of blood that would not heal until that night, I got scared. The bleeding in my mouth did not stop: every morning I would discover blood on my pillow.
By New Year's holidays I was already very pale, and I was constantly asked whether I was OK. Even my lips lost their color, and I tried to cover that up with lipstick. I had almost no energy and wanted to sleep all the time. My head ached and I felt dizzy when I got up from my bed or just a chair in my room. Finally, with my first exams I also went for a blood test. After the results were ready, I ended up at the Pediatric Oncology and Hematology unit of Municipal hospital No.31. The diagnosis sounds simply as aplastic anemia, but it is not simple at all.
I am an only and late child for my parents. My grandparents passed away, and my parents are not young anymore. In addition, my mother who reached retirement age recently had to leave her job as she stays with me at the hospital all the time.
The treatment had started already and I received an expensive drug intravenously. We need help with buying medications. I would like to get well as soon as I can, so I can return to study journalism. I cannot accomplish much if I stay sick.

Sveta Shchelokova


 

Update as of March 1, 2009. Next week, Sveta is planned to start the first course of Atgam. For now, the hospital only has a part of the required medication quantity. If the hospital does not succeed in ordering the necessary quantity under its budget, the medication will have to be purchased by the patient. Sveta feels relatively well, but she has very low thrombocyte count and needs constant blood transfusions.

Update as of March 19, 2009. Sveta has had a course of ATGAM treatment It was hard on her, she had an allergy, her blood pressure was constantly rising and she could not sleep. At the same time she is taking Sandimmun (Ciclosporin).
Now Sveta is feeling better but she is still weak and pale.
Her blood test results are not very good, twice during the treatment she had to have blood transfusion and twice placelet transfusions (her placelet count keeps going down). She has high ALT levels.
Sveta's mother

Update as of March 30, 2009. Sveta's treatment is continuing. The hormonal medication dosage was increased. Sveta's blood pressure stays high, while her thrombocyte counts keep plummeting after transfusions. She has frequent mood swings. Sveta is still pale and fatigued.
Sveta's mom

Update as of April 11, 2009. On April 3, I finished a course of Methylprednisolone that lasted a month, and I was allowed to spend a weekend at home. I was extremely happy because for over a month I could not leave the hospital walls.
Unfortunately, this "trip" was not good for me. I returned to the hospital with high temperature and sore throat. Due to infection I caught, my test counts dropped and I again developed bleedings in my gums that I have not had for a long time. Still, I know that I will have to wait for a long time for significant thrombocyte count growth, and for now I will receive transfusions, so I do not get upset and try to spend more time outside and keep myself busy with anything - reading, beading, English, or watching movies.
Sveta

Update as of June 17, 2009. Svetlana is now at home. Her blood counts are relatively good. She takes Cyclosporine and goes for regular checkups.

Update as of December 25, 2009. Sveta is now at home getting ambulatory treatment, every week she comes to hospital for examinations. She continues to take losporinum and is feeling fine.

Update as of January 26, 2010. Sveta was transferred to the adult unit. Once every two weeks she comes to the hospital for tests. She feels well and is in a good mood. She will soon start attending lectures at the university.

Update as of February 15, 2010. Sveta got re-instated after the academic leave and goes for studies at the university. She feels well and in the good mood. Her test results are normal (Sveta still goes for tests once every two weeks).

Update as of April 18, 2010. Sveta is doing well. She continues coming to the hospital for control tests.

Update as of May 24, 2010. Sveta continues Cyclosporine therapy. Her blood counts are good and she feels well. She volunteers for Red Cross and is now preparing for tests at college.

Update as of November 8, 2010. I am doing well. In September I was examined at R. Gorbacheva Pediatric Hematology & Transplantology Institute. Based on bone marrow biopsy, I was diagnosed with remission.
I am now monitored at clinic #31 at Pavlov State University. I still take cyclosporine and get tested regularly.
Sveta

Update as of July 23, 2018. Thanks to the supporters' help, the initial installment to S. Morsch registry for 6,000 euros was transferred. The donor search for Svetlana was started.

Update as of August 27, 2018. Svetlana is at home, while her doctors are on vacation. She monitors her blood counts locally. Her hemoglobin count has been decreasing. Svetlana feels unwell due to fatigue. The search for bone marrow donor continues.

Update as of September 20, 2018. Svetlana does not feel well due to general weakness, dizziness and nausea. She is a day patient at Gorbacheva Institute, where she goes for tests and IV drips. Recently the doctors had to hospitalize Svetlana and transfuse blood components three times, because her hemoglobin dropped. At present hemoglobin is dropping again and soon another transfusion will be needed. Lately Svetlana had to have three transfusions of donor's blood a month. There is no news about a bone marrow donor yet.
Svetlana continues to work remotely and in her school. In the last two weeks she has taken part in several very interesting educational projects with her colleagues. She also attended her friends wedding in Moscow. All of that was challenging, but Svetlana is doing her best.

Update as of October 22, 2018. I am doing about the same overall. Last week I was hospitalized again because my hemoglobin count went down. I received a transfusion. The next planned hospitalization at day unit of Hematology unit of First Medical University is scheduled for late October. I don't feel too well and it is difficult for me to commute to work. Recently I found out that there was no bone marrow match for me in the European registry, and it was decided to extend the search to other continents. I am now waiting for the news.

 

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Records of money received
 Name  Sum  Transferred from  Date
Alexander Loshilov $30 paypal 11.02.2009
Sergey Levitin $300 paypal 16.02.2009
  - - 1000 rub unikassa 04.03.2009
Vladimir Pavlenko $100 paypal 19.03.2009
Tiger 180 rub webmoney 26.03.2009
  - - 100 rub unikassa 02.04.2009
  - - 50 rub unikassa 10.04.2009
Svetlana 500 rub cash 24.04.2009

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design and styling - A.Ryahovsky | make-up and programming - E.Sourmava | finansial support - Yu.Klimova | translation - M.Fedotova, K.Filatova, Elena Alexandrova | copyright and administration - P.Greenberg