Category Archives: English

Press Release – DKMS – Together for Joon

Minh-Khai Phan-Thi and Marcel Nguyen support the worldwide search for a suitable stem cell donor

Tübingen/Berlin, 12 August 2013 – 18-year-old Joon, originally from Vietnam, has blood cancer and desperately needs a stem cell donation. To help her, the German Bone Marrow Donor Register DKMS, actress Minh-Khai Phan-Thi, gymnast Marcel Nguyen and the German Gymnastics Association have joined forces to call on everybody – and especially people of Vietnamese origin – to sign up as stem cell donors.

Minh-Khai Phan-Thi and Marcel Nguyen
Minh-Khai Phan-Thi and Marcel Nguyen

Since being diagnosed with blood cancer a few weeks ago, Joon has been fighting for her life. Born in Haiphong, Northern Vietnam, she was adopted as a baby and now lives in France with her family. Last year she started studying physics in Geneva in order to pursue her dream of becoming a scientist. But right now that dream suddenly seems a long way off because without a stem cell transplant she has no chance of recovering. A worldwide search is on but so far, no suitable donor has been found.

As soon as actress Minh-Khai Phan-Thi and gymnast Marcel Nguyen – both of Vietnamese origin – heard about Joon’s illness, they immediately agreed to help and are now appealing to people to join the stem cell donors’ register. The German Gymnastics Association (DTB) and especially its President Rainer Brechtken have also made a lasting commitment to fight for the needs of blood cancer patients.

“It’s great to have such high-profile supporters on our side in the fight against blood cancer. I hope that together we’ll be able to motivate people to register as donors,” says Claudia Rutt, managing director of the DKMS.

To Claudia it is especially important for people of all nationalities to join the DKMS register as potential donors because stem cell transplants require patient and donor tissue characteristics to match. These characteristics are determined by the person’s regional origins. “We inherit half our tissue characteristics from our father and half from our mother, and they depend on our parents’ regional origins. For Joon we are more likely to find a donor among the Vietnamese population.”

Claudia Rutt continues: “A lot of people living in Germany have their origins elsewhere. So to help blood cancer patients from all parts of the world, we need plenty of donors from all different places. Help us get as many people to join the DKMS donors’ register as we possibly can! That way, we can give as many blood cancer patients as possible a chance to survive.”

You can register online anytime

in Germany = http://www.dkms.de/joon!
in Poland = http://www.dkms.pl/dawca/rejestracja/index.html
in United Kingdom = http://www.deletebloodcancer.org.uk/joon
in USA = http://www.deletebloodcancer.org/joon

Joon is taking few days off…

Joon had her last chemotherapy for this cycle at the hospital last week (in addition to oral chemo tablets that she takes daily). She also had a bone marrow examination today to verify if the percentage of malignant cells is going further down as planned. She will have the results in a week or so.

She will start the second cycle of her treatment next Tuesday. This time, she will have to stay at the hospital for about 10 days. The rest of the treatment will then be done in ambulatory care as before. As the end of this cycle, towards end september, a decision will be made by the medical team regarding the transplant. So far, no matching donor has been found, therefore the search does continue.
For now, the family will take few days off and return to their house near Poitiers (L’Isle Jourdain). Departure by car early tomorrow. Several friends and Joon’s brother have been helping to finish part of the renovations in the house, so that it could be ready for her arrival. Joon has not been to the house since April and looks very much forward to it.

She also received good news from her university, as she will be able to attend exam sessions in September for some topics she could not pass in June. So she is spending her free time studying and get ready for it…!!

Joon prend quelques jours de vacances…

Joon a eu sa dernière chimiothérapie pour ce cycle à l’hôpital la semaine dernière (en plus de comprimés de chimio orale qu’elle prend tous les jours). Elle a également eu un examen de la moelle osseuse aujourd’hui pour vérifier si le pourcentage de cellules malignes descend encore davantage, comme cela etait prévu. Elle aura les résultats dans une semaine.

Elle va commencer le deuxième cycle de son traitement mardi prochain. Cette fois, elle devra rester à l’hôpital pendant environ 10 jours. Le reste du traitement sera ensuite réalisé en ambulatoire comme auparavant. En fin de ce cycle (vers la fin septembre), une décision sera prise par l’équipe médicale concernant la transplantation. Jusqu’à présent, aucun donneur compatible n’a été trouvé, donc la recherche se poursuit.
Pour l’instant, la famille va prendre quelques jours de congés et va retourner dans leur maison près de Poitiers (L’Isle Jourdain). Départ en voiture demain matin tôt. Plusieurs amis et le frère de Joon ont aidé à terminer les rénovations dans la maison, de sorte qu’il pourrait être prêt pour son arrivée. Joon n’est pas retournée dans la maison familiale depuis avril et attend ce moment  avec impatience.

Elle a également reçu de bonnes nouvelles de son université. Elle sera en mesure d’assister aux sessions d’examen en Septembre pour certains sujets qu’elle ne pouvait pas passer en Juin. Elle consacre donc son temps libre à étudier et à se préparer pour cet exam…!

Những ngày nghỉ hè của Joon…

Tuần vừa qua, Joon đã kết thúc đợt hoá trị đầu tiên tại bệnh viện nhưng em vẫn phải tiếp tục uống thuốc hàng ngày. Hôm nay, Joon vừa kiểm tra tuỷ sống để xác định tỷ lệ tế bào ung thư có giảm xuống nhiều hay không. Kết quả của đợt kiểm tra này sẽ được bệnh viện thông báo trong tuần tới.

Đợt hoá trị lần hai của Joon sẽ bắt đầu vào thứ ba tuần sau. Em sẽ phải ở lại bệnh viện trong vòng 10 ngày, tiếp theo đó sẽ lại là một đợt điều trị ngoại trú. Đến cuối tháng 9 khi đợt hoá trị này kết thúc, ê-kíp điều trị sẽ ra quyết định về việc cấy ghép tế bào gốc. Hiện nay, việc tìm kiếm người cho tế bào gốc vẫn tiếp tục được tiến hành vì không một ai trong số những người đăng ký cho tặng có mô tế bào tương thích với Joon.

Kỳ nghỉ hè của gia đình Joon đã bắt đầu từ một vài ngày nay. Họ sẽ quay trở lại ngôi nhà của mình ở gần Poitiers (vùng L’Isle Jourdain) vào sáng mai. Bạn bè và anh trai của Joon đã sửa sang nhà cửa để sẵn sàng đón em về ngôi nhà thân yêu của mình. Joon rất mong ngóng được trở về nhà vì em đã phải xa ngôi nhà của gia đình từ tháng 4 vừa qua.

Joon cũng vừa nhận được một tin vui từ trường đại học của em: tháng 9 tới, Joon sẽ được thi những môn học mà em không thể thi vào tháng 6 vừa qua. Chính vì  vậy, Joon dành thời gian rảnh của mình để học và chuẩn bị cho kỳ thi này…!

Help Joon Find a Stem Cell Donor

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Joon’s Story…

joon

Who is Joon ?

Joon was born in 1995 in Northern Vietnam, and we first saw her beautiful smile at a maternity hospital in Haiphong when she was one month old, when she joined our family and became part of our lives. Joon grew up around the world with her traveling family; first in Laos, then in Bangkok, New York, Vienna, and most recently back in France. She is bi-lingual in French and English, and finished her secondary studies last year at the French ‘high school’ in Ferney-Voltaire near the Swiss border, where she earned her French Science baccalaureate with honors. She started her university studies in sciences and physics last September in Geneva.

Joon is full of enthusiasm for life: she is fascinated by science and quantum physics and looks forward to working as a research scientist; she expresses her creativity through drawing and projects, plays the piano, and has made many memorable meals for friends and family.  Even her meals are small works of art. Joon is always working on a project: planting a garden, knitting, plastering and painting to remodel her bedroom, and even now is making beautiful origami creations for the nurses at the hospital. (to read more about Joon, click here)

What is happening to her?

Last May, Joon was feeling tired and sick. The doctor didn’t find anything wrong, but ordered blood tests. The results came that very afternoon, and Joon was immediately hospitalized at the university hospital in Geneva. Her lymphoblast level was at 137 000, while patients are considered at risk starting with levels of 50 000.

Joon has acute lymphoblastic leukemia –Philadelphia Chromosome positive.

Joon immediately started chemotherapy. She is in a sterile room, but some visitors are allowed. The chemotherapy makes her quite sick: nausea and vomiting, and muscular pain in her face and body. Thankfully, she is able to tolerate a medication that helps with these symptoms. She spends her few free hours in the afternoon watching movies or talking to visitors.

Her treatment:

  • A thirty-day cycle of “light” treatment (ongoing)
  • Assessment and two weeks of recovery during which she will be able to leave the hospital if her immune system allows it.
  • A thirty-day cycle of “heavy” treatment.

When this second cycle finishes, she will have to undergo a stem cell transplant. Because of the genetic mutation—the Philadelphia chromosome—she has no chance of recovering without a transplant after this second round of chemotherapy. This transplant needs to take place in December.

Our challenge and our request: Finding a compatible donor

We must find a donor whose blood stem cells are compatible with Joon’s.

Since Joon is an adopted Vietnamese child, there are no compatible donors from within her adoptive family. (The probability of compatibility between random individuals is very rare: one chance in a million.)  To find a compatible donor for Joon, we must find a donor whose genetic profile is as close as possible to hers.

For this reason, the best chance of finding a match is from within the same ethnic group as Joon. Unfortunately, there are very few Asian (and in particular Vietnamese) potential donors enrolled in the international stem cell donor registry, although sadly, there is a high incidence of Joon’s disease in this community.

How to help us and how to help them?

  1. Sign up on the national register of your country to become a potential donor, by contacting your closest donation agency (see links on the right column to find your nearest center). Procedures can vary from country to country. Your registration will help Joon if we are lucky enough that you two are compatible. You might also be helping another person of the same ethnic group who has a similar condition.
  2. Spread the message! Especially in Asian and Vietnamese communities. The more people who register, the better the chance to find a match for Joon. Your message might be the one that inspires the person who is a perfect match for Joon to register.

Signing up on the national register: who and how?

Who can become a donor?

Anyone and everyone can volunteer to become a donor and thus give a patient a better chance of recovery.

To become a donor, one must:

  • be in good health
  • be 18 or older, and younger than 55 during registration (this limit depends on the country: for example, in some countries one must be younger than 51 and in others up to 60)
  • Fill out a questionnaire and take a blood test or a swab test

Wherever you are in the world, your donation can save a patient no matter where they are. Your stem cells can be rapidly transported anywhere in the world.

How to become a donor: a simple, two-stage procedure and the potential to save a life

  1. Preliminary stage (points 1-5): Information and registration (see links on the side bar).
  2. Selection stage (points 6-9): If and only if there is a match. Today, a match is found for about one in a thousand persons registered.
Click to enlarge
Click to enlarge

There are two types of donations, stem cell transplant and bone marrow transplant, and procedures and practices vary by country.

  • Provide blood stem cells through a process called ‘apheresis’: A few days prior to the procedure, the donor receives several injections to increase the production of bone marrow stem cells. The necessary cells are then extracted from the bloodstream through a cell-separating machine during a four-hour session. Only one or sometimes two sessions are necessary to retrieve sufficient cells in the bloodstream. The sessions take place in transfusion centers.
  • Bone marrow sample: More rarely, samples must be retrieved surgically. Bone marrow is extracted with a syringe from the pelvic bone. The operation is done under general anesthesia and thus takes place in a hospital.

Risks associated with these procedures are minimal. Please see the sites at right for further details and statistics.

Stem cell and bone marrow donation within the international registry system follows three fundamental principles:

  • anonymity between donor and recipient;
  • the voluntary aspect of the procedure;
  • there is no cost for the donor, and no payments from the recipient to the donor.

It works!

Blood stem cell donations helps treat and heal many blood illnesses such as leukemia. You can find inspiring testimonies and stories from both donors and recipients on sites such as Be the Match and A3M.

Thank you for your time and support for Joon and for others afflicted by leukemia and other blood sicknesses.