MDS and me: a long story

MDS and me: a long story

In the spring of 2011, during a routine blood analysis, it was discovered that I had a very low white blood cells count. I need to explain that in France, we have ones a year a checkup by a special doctor during the time we are in activity. For me, as I was working as a chemist for a government agency at the Curie Institute, I had this twice a year.

I was sent to an hospital for further investigations. I had a myelogramme, which showed that I had MDS. The three lines of blood cells were affected, which was kind of unusual. The “special doctor” at Curie outlined the fact that it was possible to make a link between MDS and the use of benzene. At this time, I did not use benzene anymore, but I had used it years ago, and in small quantities anyway.

Of course there are no ways to prove anything. In fact, there are other factors which can be responsible of the disease (beside the genetic propensity of course), like previous chemotherapy, radiotherapy, exposition to radiations. In fact, during 9 years I was exposed to “low level of irradiation” in the office at the Curie Institute. My desk was located just above a radioactive spot, probably a radium contamination. There were several other “spots” in the room, which means that we were exposed to radon too, coming from the radium decay. The concentration of radon in the atmosphere was never measured (too late now as the radioactive spots have been cleaned!). It was also discovered during the cleaning a big spill of mercury below the wooden floor. So we were also exposed to mercury vapor! Conclusion: back in the old good times, researchers had low ability as experimentalists! (In fact, we learned that the office we were in was a “physics lab” and that the researcher worked on radium-mercury alloys!).

After some time, I lost the possibility to do organic synthesis because the doctor forbade me to use solvents. It was hard, as I enjoyed so much working by myself in the lab… Even, for my following yearly visit to Boulder (Dept of Chemistry and Biochemistry, Prof.D. Walba’s team), I did not enter the lab I used to work in: it was so heart braking…

I retired in April 2015, but got an emeritus status so I could come to the lab and do some writting and no real chemistry.

However, during all those years the situation regarding my blood analysis did not change that much, just a slow decrease of the red blood cells and the platelets (the neutrophil count was so low from the start that it could not change much :-)!).

Then, when we came back from Boulder on mid-december 2015, everything changed. When I did my regular analysis, 3 days after coming back home, we discovered that I had anemia. So I did a red blood cells transfusion in a kind of emergency. My count of platelets had also dropped and  was also a concern for the doctors. It was early January 2016, and in less than a few months everything had changed…

 

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From the Earth to the Moon and back:on my way to a cure for MDS

From the Earth to the Moon and back:on my way to a cure for MDS

Greetings from Bures sur Yvette (France)! In this blog, I would like to share with you my trip to reach my goal: wining the fight against MDS or myelodysplasic syndrome (http://www.mds-foundation.org/). I guess it will be a bumpy road, but I am confident that “We can do it” ;-)!

I will start by a short description of this little known disease, then will explain how and when it was discovered for me. I will give a short description of “the trail” I will be following in the near future…

What is MDS? MDS is a kind of disease affecting the function of the bone marrow. In the bone marrow are located erythropoietic stem cells, the stem cells which are producing all the type of “cells” found in the blood: red blood cells (erythrocytes), white blood cells (leukocytes) and platelets (thrombocytes). When you have MDS, the erythropoietic stem cells don’t work correctly, so you end up with not having enough of those cells in your blood. Most of the time, people have not enough red blood cells and it is called anemia. This disease has usually not known origine, but it is more often found in people who have been treated by irradiation and/or chemotherapy to cure a cancer. It has also been related to the exposition of specific chemicals such as benzene. The evolution of the disease is varying a lot from people to people, so it is very difficult to see trends. To make it short, the “only cure” for MDS is a bone marrow or erythropoietic stem cells transplant. In order to do that, you need to find “a match”, somebody who have the same or close HLA system (https://en.wikipedia.org/wiki/Human_leukocyte_antigen). Once a donor is identified, the real cure can start. Of course, before the transplant, the doctors will have to wipe out the defective stem cells in the recipient’s bone marrow. A strong chemotherapy is needed. This part is the tricky one since all the natural defences will be destroyed. The recipient will have to stay in a “clean” room, i.e.a sterile room. It is a kind of “bubble”, very similar to a space station (the title of the blog is coming from this analogy!). The contacts with outside world are limited: visiting people have to wear a special outfit including a mask, similar to the outfit we use when working in a clean room in a lab. So, no physical contacts with the visitors! No kissing, no caress… Then the good stem cells can be injected. They find their way by themselves to the bone marrow. After some time, they will start their job and will produce the needed blood cells. It is a slow process which requires weeks. During this time the recipient will have to stay in the special “aseptic environment”. Then if things work fine, the recipient will leave the hospital to go home to start a new life as “a chimera” with two DNAs, one for the things related to the blood, and one for the other parts of the body: funny is not it? Well I should add that the process toward a full recovery is a lengthy one, taking months to years… I guess this is about what I know about MDS…