Dear intombi girls,

once each month we are discussing offers supporting a good start into the future for girls. But what if the question arises whether a future is even possible – due to a serious illness?

We are telling you how we can contribute together.

It is a devastating diagnosis. A diagnosis that can affect anyone anywhere in the world: blood cancer.

A life-threatening diagnosis that is very frightening

Today, we are telling a story with a happy ending. The story of Rinah, a patient, Manu’s experience as a donor and an expert’s answers to the most frequently asked questions.

Rinah (now 16) from Aschheim was diagnosed with blood cancer and received a life-saving stem cell transplant at the age of 12 in 2015. Previously, on July 26th 2015, there had been a large registration campaign in Aschheim, in which 4,624 people were registered in the German Bone Marrow Donor File (DKMS – Deutsche Knochenmarkspenderdatei) – and others followed.

Finally, they could get to know each other 

For two years, Rinah, her mother Patricia and her sister Sarah had been looking forward to finally getting to know her life-saver. All she knew was that she was from the United States and that she had donated stem cells in the San Diego hospital. In San Diego in summer 2017 it was finally time and she met Martha Vasquez (45) from Los Angeles.

When Rinah remembers how sick she was, she is happy and proud of what she has accomplished. She regained a normal teenage life and no longer has to take any medication. That’s why she happily continues to be committed to the DKMS and encourages people to register – for example in May 2019 with a campaign for students for the „world blood cancer day“ at a school in Erfurt.

It mainly affects children 

Blood cancer is a malignant disease of the heamatopoietic system. For many patients, the only chance of a cure is to transfer healthy stem cells from a suitable donor.

Rinah’s story brought her closer to her future dream 

Wer ist die DKMS?

DKMS (German Bone Marrow Donor File) wants to find a suitable donor for every blood cancer patient or provide access to therapies – all over the world.

  The 5 most common questions answered by Simone Henrich from DKMS

1. How does the typing work? Who can register as a potential donor? Every typing is now possible via a smear of the cheek mucosa of the donor. A cheek mucous membrane swab is taken using three so-called “buccal swabs” (special medical cotton swabs). Then they are sent to our laboratory together with the completed declaration of consent. Any healthy adult aged 17 to 55 can become a potential donor.

2. How often is the donation made and what is the procedure for the donor in this case? In our experience, a maximum of five out of a hundred potential stem cell donors will donate a stem cell within the next ten years. If someone is considered a donor, the person will be contacted by the DKMS. Before the actual donation is made, the health check and the confirmation typing must be carried out. Two possible procedures are used for stem cell extraction. The decision as to which to use depends on the patient’s needs. Donor requests are taken into account where possible. In peripheral stem cell extraction (apheresis) – a procedure that is used in around 80 percent of cases – the stem cells are taken from the bloodstream. The donation lasts three to five hours, in rare cases a subsequent donation is necessary the following day. The donor can leave the removal clinic on the same day. The second option is bone marrow extraction from the pelvic bone, which takes place in around 20 percent of cases today. Two small incisions in the area of ​​the posterior pelvic bone are usually sufficient for removal. The risk is essentially limited to anesthesia.

3. Which patient will you never forget? What was special? At DKMS you basically come into contact with many great people – be it our donors, our supporters or our patients and their relatives. Again and again you are lucky enough to be able to experience very special moments. An encounter that I will certainly not forget was the meeting with Mathies from Norderstedt in autumn 2018. The boy was suffering from severe aplastic anemia in 2007 – at the age of five – and exactly 10 years after a registration campaign that I was involved in, I met the family again and it was really moving to see and hear how great Mathies has developed since then and what plans he has for his future.

4. How do you deal with this if you cannot find a suitable donor for a patient? Our goal is to help every patient and give them a second chance at life – but in fact it is not always possible and no suitable stem cell donor can be found. In Germany alone, one in ten patients waits in vain for their “genetic twin”. We do everything we can to ensure that as many people as possible can be registered and that more and more helpful donors are available for the global search – so that even more life chances can be given.

5. Why should our readers register with the DKMS? Because it can be so easy to help and give a sick person a new chance at life. Often only a stem cell donation helps these patients.

Registration with the DKMS takes only a few minutes – and can mean everything to another person: hope for a life and a future!

Join everyone and get registered! Here you can find out how.

DKMS supports the further development of therapies against blood cancer – through its own research and the latest technology in its own laboratory.

The goal is clear: “We try to help people who are at risk of dying. All over the world. That is our mission and we take responsibility for it worldwide: we defeat blood cancer!” Source: DKMS Germany

The DKMS also contacted Manu 

It has been five years since I received an email with the subject “your willingness to donate life”. The sender was clearly: the DKMS, the German Bone Marrow Donor File. Thecontent was nevertheless surprising: I had been shortlisted asa stem cell donor for a specific person. It was over ten years ago that I had been typed at my school as part of a DKMS registration campaign.

So far the DKMS had only written me to check my contact details. Now they wanted to conduct more tests with my blood– and needed new blood samples from me. That was in June.

After a few weeks I got a call

There were enough matches between my cells and those of the ill person. So, I should indeed donate. At the beginning of September there was a last preliminary examination. Now nothing stood in the way of the donation.

In my case, I’m glad I had company

I felt so well prepared for my donation that I almost went to the collection clinic on my own. Then a friend accompanied me spontaneously. She then had to stay much longer than planned. I probably have the worst veins that cellex employees have ever seen. That is why it took a lot longer to connect me to the device which filterst he stem cells from the blood and channels the rest back into the body.

Therefore I had enough time to even watch two and a half movies, while in the same time on the deckchair next to me, two people donated successively. And at the end of the day I was even fed. That hasn’t happed to me for a while as well. After almost eight hours I was finished and felt a bit mushyfrom lying down for such a long time and could go home.

The next day I found out, that I donated to a 41 year old woman from the Czech Republic.

The next day I was allowed to call cellex and found out that I donated to a 41 year old woman from the Czech Republic. About six months later, a letter from DKMS arrived stating thatthe woman was well off and in the meantime left the clinic. Unfortunately, the Czech Republic prohibits donors and recipients from getting in touch. The regulations are very different in different countries. Nevertheless, even though it wasn’t that easy for me: the effert was worth it and there is hardly an easier way to save a life. I would definitely do it again.

Have you been typed already? What moves you concerning this topic?

If today’s report affected you particularly and if you have questions or need support in another way, feel free to contact us any time (info@intombi.de).

Yours intombi team