ABOUT DAAN

About Daniel

About three years ago, Daniel was diagnosed with Multiple Sclerosis “ MS”. For the time being an incurable chronic and progressive degenerative disorder of the central nervous system. The nervous system, which consists of the brains and spinal cord is the operating system of the body and plays an important role in the coordination of all kinds of conscious and unconscious activities which we take daily. By inflammation this crucial operating system is affected. MS is, therefore, not a muscle disease such as it is thought by many people.

 

The “Daniel” variant (relapsing remitting) is associated with so-called attacks and periods of recovery, but long-term he hands in more and more. How the disease proceeds, is individual and can’t be predicted by the doctors. And that is precisely what makes the disease so bitter and elusive. MS brings to patients sorts of uncertainties and raises questions such as: can I still work? Can I still raise my children? Can I grow old with it? What can I still do and what not?

 

For Daniel, these questions are the order of the day. His life changed completely within a few years. His illness is getting more aggressive. He has great difficulty with speaking, and due to poor visibility, muscle weakness, severe vibration and loss of coordination in the hands, lower back, legs and feet he has problems with walking. With crutches, he can still move himself, but to get anywhere he depends on a wheelchair. MS also affects his cognitive functions. Multiple tests revealed that his IQ drops, he is forgetful, concentration and orientation problems and start thinking more slowly. This can be best described as slightly dementing, something he, sad as it is, knows to well. Whether this will still improve and if he will ever walk again spooks in his head daily.

 

As to MS he has lost his job as a police officer. This was also an immediate end to his dream to be working for the SWAT Team within the National Police. His active and sporting life has completely disappeared and Daniel spends his days mostly from within the four walls of his house. A forced imprisonment with no prospect of getting better.

 

Believe it or not, but his poor speech (slurring) and his way of walking, people in the mall walk around him with a big bow. Children were pulled away from him and once even called the police (his colleagues) because people thought that he was an alcoholic, psychotic or had taken a drug overdose. People with some more social empathy would ask if he had a stroke. Very painful experiences witch  Daniel didn’t want to face anymore.
Because of this, he knows like no other how to ‘hide’ and he hardly leaves his house. If he comes anywhere else he’s got his head down and he speaks hardly. Calls he will postpones until the last moment and make an order at a store he leaves to his wife. Also on friends’ birthdays, he is almost impossible to find, for fear that people staring at him ore do not understand what he says. Daan sees a “normal” life, to the extent that you can speak about that, increasingly slip through his hands and his world is becoming very small.

 

Even raising his children’s is getting impossible for him to do. He has never been able to bring them to school and if he goes with his wife, he remains in the car. Afraid that his daughters will be bullied if other kids see him. Also going to their swimming lesson is not possible. The pool is too crowded and too hot, not ideal for an MS patient. He is not even able to learn his children to ride there bikes without training wheels. Tasks he as a father can not do frustrate him every day and the feeling of failure is increasing.

 

But Daan is a fighter and go-getter!! Someone who, no matter how hard it gets, NEVER give up. That is why he is now following an intensive rehabilitation program to cope as well as possible with its current limitations. A long-term solution, however this is not. This grim disease can strike further at any time and the question is what new restrictions will come. MS is not directly fatal, but rare and aggressive variant shortens life expectancy significantly and has a passive and inhuman degradation as a result.

 

Yet there is hope, and may be a promissing stem cell treatment abroad stabilizes the MS and will improve the neurological disabilities!

 

About the treatment

“In order to stop the progression of my illness I urgently
Need a hematopoietic stem cell transplant!!

 

A mouthful, but it simply means that my immune system needs to be reset. ”
What is Non-myeloablative autolog hematopoietic stem cell transplantation?

 

Hematopoietic stem cells (HSCs) are the “seeds” of the cells that are the building blocks of our blood and the immune system. With adults, these stem cells are located in the bone marrow, a complex soft tissue located in the cavities of particularly large, flat bones. During our life differentiate a large number of HSCs continuously in order to replenish the blood and lymph nodes. Also, they replace mature cells and cells that are eliminated or lost at the end of their functional life. HSCs are essential for our development and survival. The ability of HSCs to replenish the blood and immune system is a very useful feature for the treatment of certain types of disturbance. By admitting HSCs a lot of new , healthy cells will continue to generate, and someone can even be “rescued” by an error in the bone marrow that is caused by damage to the marrow or exposure to radiation therapy or chemotherapy. In experiments  a single HSC has renewed the blood of a mouse, so that the mouse has survived a, under normal circumstances, lethal dose of nuclear radiation!

 

HSCs in the hospital: hematopoietic stem cell transplantation

Today hematologists make regular use of HSC in hematopoietic stem cell transplantation (HSCT) infusion in people who have had high doses of immunosuppressive radiation or chemotherapy to stimulate the production of blood cells, so that it increases. HSCs are normally harvested using a bone marrow puncture in which the stem cells are sucked from the bone marrow of the hip bone. Ore one stimulates the growth of the stem cells so that they end up in the peripheral blood. By the admittance of a hormone that stimulates cell division, a number of HSCs will end up in the blood stream. The patient’s blood is put into a cell separator where the HSCs are collected together with the white cells from the peripheral blood. This process is called leukapheresis. The HSCs can be further purified by cells with the CD34 markers on which they bear to select the cell membrane. Umbilical cord blood is rich in HSCs and has been used for hematopoietic transplantation in cancer, especially with children who did not have a matching bone marrow donor. The HSCs can be harvested from a patient, and are kept to be admit later, after the chemotherapy again on the same patient; This procedure is called autologous stem cell transplantation. A genetically “matching” donor can be found among the family members of the person or from a donor registry for bone marrow or umbilical cord blood; the transplantation of HSCs from another person is called allogeneic stem cell transplantation. Allogeneic or autologous HSCT have a different indication, and all two widely used for the treatment of blood cancer, lymphoma and bone marrow cancer. HSC transplantation has been used for tens of thousands of people with leukemia, lymphoma, myeloma and other bad tumors and has been a life-saving treatment.

 

How autologous HCST works in MS ?

The damages in MS are infiltrated with blood from the immune cells. Among these are also T and B lymphocytes that seem to attack the myelin producing cells and damages them. We don’t know what causes this attack, but the process is almost certainly related to the incorrect functioning of the immune system. The purpose of HSCT in MS is to purify the immune system with existing immunosuppressive chemotherapy and by regenerating a population of new, healthy immune cells. This means that he mature cells of the immune system that attacks the brains, can be eliminated and be replaced by new, harmless cells. Recent research has shown that this “reset” of the immune system actually happends and that the thymus (thymus), the organ where haematopoietic progenitor cells develop into mature T lymphocytes, is reactivated after HSCT. This increases the number of T cells, possibly including “regulatory” T cells that suppress the auto-immune attacks, increasing.

 

What can HSCT do for people with MS?

In the year 2016 hundreds of people around the world had a hematopoietic stem cell transplantation. Although randomized controlled research, which accurately determines the effectiveness has not yet been completed, the analysis of the previously reported results an indication of what they can and can not achieve with this treatment at this time. First of all, HSCT has, in general, shown a positive effect on the suppression of inflammation and the development of new plaques as shown with a MRI at an average of 80% of the patients. In a majority of treated patients stabilized and even improved the existing neurological disability. Although in principle HSCs can transform into any progeny of a cell, including neural or myelin-producing cells, we don’t not know whether HSCs actually helps neural structures which already have been damaged by MS, to recover.

 

Issues for consideration
At the moment there is international scientific phase 3 research to investigate nonmyeloablative autologous hematopoietic stem cell transplant (aggressive) relapsing remitting MS (RRMS). By means of immune therapy and re-introduction of stem cells, the immune system can therefore be “reset”. The resetted immune system is rapidly built up through the body’s own stem cells so the risk of infection and complications is smaller and the MS disappears. The immune system is returned to a point before the MS originated. In addition, the stem cells can potentially partially recover the damage that was caused in the central nervous system by the MS recover. These results with a success rate of approximately 80% based on over 20 years of research and are the basis for international research that takes place in America, England, Sweden, Russia and Mexico. Whether the treatment is a cure, we can not yet say with certainty. This is why research into this treatment is so desperately needed. The results that are scientifically analyzed and published the past 20 years are so encouraging that scientists are in discussion about when you should consider MS as cured!