17-year-old Pauline Richter has a rare disease. She urgently needs a matching stem cell donor to get better.
Cheeks/Querfurt/MZ – Pauline is 17. Like others her age, she likes to hang out with friends. Her career aspiration is to be an elementary school teacher, says the student from the Nebra district of Wangen. But that could be delayed a bit, she adds. Because in the past two months she could no longer go to school, but had to spend a lot of time in the University Hospital Halle. Pauline is sick. She was diagnosed with a bone marrow malfunction. PNH (paroxysmal nocturnal hemoglobinuria) is the name of the rare disease.
The best way to help the 17-year-old to get completely well again is a stem cell donation from a genetic twin. Who is now being sought. The Carl-von-Basedow-Klinikum Saalekreis has started an appeal last week. Michael Richter, Pauline’s father, works at the Basedow in Querfurt as a house technician. As he tells it, his colleague Andrea Wagner had inquired about Pauline’s state of health and then told him that she wanted to help with Bettina Lebek, responsible for public relations. Lebek contacted the German stem cell donor registry (DSD); in the meantime there are several appointments in the region to get typed (see box). The fact that Pauline is looking for a genetic twin has spread rapidly, the family gets a lot of feedback. "We are overwhelmed by the response that so many want to help," says the father. The family is grateful for any support.
Several times a week, Pauline has to go to the University Hospital in Halle for treatment
"Now Pauline fights her way through with constant blood checks and subsequent blood and platelet preservations," says the father. Several times a week, the 17-year-old has to go to the clinic in Halle for examinations and treatment. There she was also on Monday. The morning after, the 17-year-old is at home. She is doing well: . "When I get new blood, I actually feel relatively lively and fit." But that didn’t last long, about a week. "Then I am limp and tired, and have the feeling, I just have to sleep, sleep, sleep."
Exhaustion was also one of the first signs of her illness at the end of November last year. At Laucha High School, where Pauline is in the 11. class, was a period of exams. "At that time I was very tired and under stress. I thought it was the school and not something health-related." Am 2. December it became worse. "I was listless, had circulation problems, didn’t eat anything anymore."
The next day, her mother took her to her family doctor, Dagmar Duscha. "Pauline had a kidney pelvic inflammation. Ms. Duscha also did blood work," reports mother Beatrix Richter. In the night then suddenly an ambulance drove up at the family in Wangen. The family doctor had sent this, the 17-year-old should immediately in the university hospital. "Mrs. Duscha had waited until the evening for the blood count to be evaluated," says the mother, who is very grateful to the doctor. Pauline’s values were very poor. Her daughter received immediate help at the clinic. In general, they feel cared for and well looked after there. 20 days Pauline lay in intensive care, on 23. December she was allowed to return home for the time being.
Pauline from Wangen depends on stem cell donations
Blood is now regularly supplied to her in the hospital. "If there is no donor, then it doesn’t work any other way," says the girl who, despite her illness, thinks positively and hopes for a matching donor. There may be another way than stem cell donation to fight the disease. "A medical treatment. But this would have only a 50 percent chance of success. If it were to work, Pauline would still be in constant treatment," explains her father, adding, "That would be Plan B." Plan A is the stem cell donation. The family had high hopes that Pauline’s younger sister, 13-year-old Johanna, would be a possible donor. But unfortunately this is not the case.
Possibly there is someone in the donor file. So far, however, no one has been discovered. The chance of finding someone for Pauline would increase even more if many people were willing to donate stem cells and had themselves typed. Apart from that, you can also help many others with a donation, according to Michael Richter, who as honorary community fire chief of the Unstruttal municipality attaches great importance to helping others.
Typing campaign planned in Merseburg, Querfurt, Freyburg and Laucha
To help Pauline and the Richter family, several typing and charity events were organized: Friday, 4. February, 11 a.m. to 3 p.m., DRK blood donation campaign at the Carl-von-Basedow-Klinikum in Merseburg, Weibe Mauer 52 ; Saturday, 5. February, 4 to 7 p.m., Benefit event, Nebra Volunteer Fire Department apparatus house; Monday, 7. February, 1 to 3 p.m. DSD typing campaign at the Carl von Basow Clinic in Querfurt, Vor dem Nebraer Tor 11; Thursday, 10. February, 1 to 3 p.m., DSD typing campaign at Merseburg Hospital; Saturday, 12. February, 10 a.m. to 3 p.m. DSD typing campaign, Real market in Querfurt, Vor dem Nebraer Tor 5; Wednesday, 16. February, DSD typing campaign, Freyburg town hall; Monday, 28. February, 11 a.m. to 3 p.m., DRK blood donation campaign with typing at the Laucha Gymnasium, Eckartsbergaer Strabe 19, Laucha