My name is Bea, I'm 34 years old and I've been suffering from multiple sclerosis (MS) for more than 12 years.
This autoimmune disease is destroying my body.
The year 2021 is drawing to a close in great strides. It was an eventful, exhausting and power-wrenching year. But this year was also shaped by all the lovely people who have accompanied me through this year and my hardest time and have made my new start with stem cell transplantation possible. Above all, the time in the clinic and the time up to now are characterized by side effects of the treatment. But I gladly accept this in return for my illness to stabilize and then hopefully I'll get better little by little. I have already noticed the first small improvements. However, I also have high hopes for the planned rehab that I want to do next year. Today I also got the message that we could agree with the health insurance company that we will not stay seated at any cost. What good news the day before my birthday.
Many thanks to each and every one of you for the support and help I received during this difficult year.
I wish you all a wonderful New Year.
Start the new year full of joy, happiness and health.
I don't know what the future holds, but I am very happy and you have helped me so much.
I thank you from the bottom of my heart.
Hello everyone, today it has been exactly a month since I got my frozen blood stem cells back. My new beginning. I've been home for about 2 weeks now and have so much more energy besides the roller coaster ride of the side effects.
But not nearly as bad as being at the mercy of my old illness.
So far it has been small things for outsiders that mean so much to me.
I suddenly feel more vitality again.
I notice that my body is no longer in my way.
Time will tell what I can work back with a lot of willpower and training.
I am very happy that I had the opportunity to do this therapy and I just regret not having done it sooner.
Many thanks to each and every one of my supporters and companions ❤️
A short update to all supporters:
About 6 weeks ago I was successfully carried out the stem cell collection. After that I couldn't wait for it to finally start. Unfortunately, shortly before the start of the planned therapy on September 6th, I was welcomed. thrown back by a cold by 2 weeks. But since the beginning of last week I have been in the university clinic for the planned stem cell therapy. I am totally happy and excited that my MS is finally getting upset. I wish me the best of luck for the currently very debilitating and delicate part of therapy with high-dose chemotherapy and stem cell return. Greetings & Stay healthy, Bea. Because without health everything is nothing.
Hello everyone, it's time for a new update:
My request for reimbursement to the health insurance company was rejected directly by them. I went into contradiction. Last week, however, chemotherapy to mobilize stem cells began as planned. Unfortunately, I had to struggle with immense side effects from chemo and had to take the ambulance to the hospital. After two days and a few infusions, I was able to leave the hospital. I am very excited that it is really going to start step by step, now I am happy to be able to kick my illness in the butt. I've had to endure enough suffering in almost 13 years, now hopefully it's over.
Keep your fingers crossed that everything will work and that I can start an MS-free life.
May 24th, 2021 A short update to all supporters. I am very happy about your support. Thank you very much for the great help in so many different ways. Every flyer posted, every lovely message, every spread on social media brings me a good deal closer to my goal. So far, € 20,601 has come together, for which I am extremely grateful. I wish you all a happy Whit Monday. Enjoy the spring-like weather 🌷🌱 Bea 🙋🏻♀️
Wow, it was exactly one week ago when I started this campaign. What can I say but thank you very much for all the sympathy and your generous support. We have already raised over € 17,000 in this one week. Thank you for your lovely messages and every word of confidence. I was really happy about each and every one of them. It's overwhelming and I'm so grateful. Stay tuned with me! We can do it together!
I live in Wiesbaden with my husband, our 5 year old son and our 1 year old daughter. I want my children to have a carefree childhood as possible. You shouldn't have to worry about your mother all the time.
Despite the medication available, many of which I have taken, last my health has continued to deteriorate over the past few years. I can hardly walk without aids. Visual impairments, permanent joint pain and headaches also affect me. I threaten to become a nursing case.
My family and I have never been discouraged by flare-ups or other regressions. We bravely accepted every challenge. My basic attitude is that I am cheerful and can see over a lot. But now I'm at a point where this is no longer possible. MS has become a constant challenge for me and my family, and it is becoming increasingly difficult to cope with. We are longing for a family life without worrying about the daily question "How will I be doing tomorrow?".
My only hope for a cure is stem cell therapy. However, this therapy is not paid for by the health insurance companies. The renowned A. A. Maximov Center specialty hospital in Moscow under the direction of Dr. Denis Fedorenko, has been successfully performing this treatment for more than 15 years. You can find more about the hospital under "Stammzelltherapie".
I could get treatment there this autumn. I have to pay EUR 48,000 for this. Unfortunately, I don't have the financial means to do this.
I will be eternally grateful for any support.
From the bottom of my heart I wish you and your loved ones good health.
All the best,
What is MS?
MS is an inflammatory, non-infectious disease (autoimmune disease) of the central nervous system.
What happens when you get MS?
This disease makes the immune system turn against the own body and slowly destroys the brain and the insulating protective layer of the nerves. As a result, more and more functions of the body are affected and destroyed piece by piece.
The exact name of stem cell therapy is HSCT or autologous hematopoietic stem cell transplantation.
The aim of this treatment is to stop MS by restarting the immune system.
First, the own stem cells are being 'mobilized' by medication and thus enter the bloodstream from the bone marrow.
The stem cells are then taken from the blood in a dialysis procedure and frozen.
In the next step, the existing faulty immune system is then erased by several days of heavy chemotherapy.
From now on the patient must be in strict isolation, as there are no more defences against viruses, germs or bacteria.
Finally the patient's own cells are reinstated. After that a new, healthy immune system can form, which no longer attacks one's own body.
ven after the immune system has been restarted there still is a strong risk of infection for the first week after stem cell transplantation.
In Deutschland ist die Stammzellentherapie nicht als Behandlungsform bei MS zugelassen und wird daher nicht von den Krankenkassen übernommen. Als Privatperson würde es in Deutschland in einer Privatklinik circa 100.000 – 130.000 € kosten. In Ländern wie der Schweiz, Großbritannien, Kanada, Mexico, Russland und vielen anderen Ländern wird die Stammzelltherapie bei MS jedoch standardmäßig durchgeführt und von den dortigen Krankenkassen übernommen.
In Switzerland, the therapy also costs around 150,000 CHF and would have to be taken over as a non-Swiss.
In Moscow there is the special clinic AA Maximov with more than 15 years of experience under the direction of Dr. Denis Fedorenko. This clinic has gained an excellent reputation in stem cell therapy in MS.
Former patients of the clinic always reported positively about the hospital stay, the course of treatment and the staff. The cost of the therapy there incl. visa, flight ticket costs 48,000 €.
More about the clinic: https://hsct-russia.com/en/
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