MS-patient Boaz (32): ‘from where I stand (sit) today, it can only get better’

Boaz Cover

Boaz Spermon from the Netherlands, is diagnosed with an aggressive form of Multiple Sclerosis (MS) and will participate in a revolutionary treatment called Hematopoietic stem cell transplantation (HSCT) to help reset his immune system in the coming months. He hopes to ‘buy’ time by doing so, he said in an interview on Dutch national television (RTL Late Night) Wednesday 20th January 2016.

Crowd-funding

The treatment is not available in the Netherlands, nor is it covered by Health insurance. This is an expensive treatment, at least €100,000, this is why Boaz and his friends have started a crowd-funding initiative.

Wheelchair

Boaz got diagnosed with Multiple Sclerosis (MS) in September 2011. Initially the disease did not seem progressive, until autumn last year, when suddenly a relapse took over his life and Boaz ended up in a wheelchair.

‘The uncertainly is killing!’

The uncertainly is killing, said Boaz. You can get diagnosed, but which type of MS they can only tell afterwards. I may be able to tell you how today will go, but tomorrow could be completely different. That is why Boaz has been studying and following the international researches for alternative treatments. This was always my back-up plan, in case worse would come to worst.

Chemo against MS

Boaz is one of the one thousand patients globally, that participates in an international research for an alternative treatment method of MS. the treatment uses chemo therapy to break down the immune system, the immune system is exterminated of ‘bad cells’ and then rebuilt from scratch, with the help of a reintroduction of his own treated stem cells.

Bad luck

This specific treatment is already carried out in four countries worldwide, but not yet in the Netherlands. It’s a case of bad luck as not a single doctor in the Netherlands is specialized in the stem cell treatment. On top of this, opinions on the matter differ. Critics point out the great risks that are linked to the treatment. Boaz: ‘I’m not afraid of these risks, from here on things can only get worse”.

A 5-year advantage

The 11th of February Boaz will fly to Uppsala (Sweden) for the last medical tests. If everything goes well, he’ll immediately start the heavy treatment which takes one month. Afterwards Boaz will stay an additional two extra months to rehabilitate and regain his strengths. Boaz: “Hopefully the treatment will stop the development of the MS-disease, which allows me to buy time. Even if it’s only 5 years, science will have improved by then which can only work in my advantage. My biggest hope of course is to recover, just like Holly. Holly was also wheelchair-bound, but managed to leave the hospital by foot after she had finished the treatment”.

More patients

Boaz is ready for treatment: “I’m pretty confident that I’ll get out of the treatment stronger than when I started it…and I’m a sentimentalist. I already felt in the beginning of my disease it was going to get worse. Now I’m convinced it’s just a temporary phase in my life and I will get out much stronger. If the results of the final phase of the research are positive, this treatment might become a routine treatment for MS patients. Meaning more patients would benefit from this specific treatment in the near future.

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(Nederlandse Versie)

 

Boaz Spermon
Sweden

Hej Hej ik ben Boaz. 32 lentes jong en een eigenzinnige dagdromer, flierende bruggenbouwer en onverzettelijke levensgenieter van origine. Helaas ben ik sinds 4 jaar ook MS patiënt, wat afgelopen jaar nog werd bijgesteld naar de diagnose agressieve RRMS. Wat misschien toch wel een uitzichtloze situatie leek, hebben bovenstaande karakter eigenschappen en het lot mij gevormd tot wie ik nu ben and I'm just getting started. Dit is mijn verhaal. Dit is mijn levensdoel. Dit is stichting op de been. Impossible is Nothing. Let Hope Live. www.opdebeen.nl

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