192/365 -Vaccine for myasthenia?

I want to share something from one of my fellow blogging MGers. There may a cure in the works, though it just that “in the works” and could be finally be the end of such a strange, rare, misunderstood, and hardly understood disorder. We can only Hope! In addition trials were supposed to begin last month in Europe according to curavac.com They also do research for other neurological/ autoimmune disorders and diseases such as multiple sclerosis and lupus. They sound pretty close on this even though it says 2018… That is pretty close considering how long it takes medicine to go through trials, FDA approvals and so forth and it has already cleared several hurdles. I will be talking with my doctors and experts on this matter myself!

192/365 -Vaccine for myasthenia?

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3 comments

  1. dr.Sonja Pos · August 25, 2015

    Good evening from the Netherlands, Yes, I will be treated in 2017 for generalized MG with antibodies ACHR by dr.Jan Verschuuren, my brilliant and humane neurologist at the Hospital LUMC in Leyde in the Netherlands. He directs the team of specialists which has received 6 million euros(!) from United Europe to develop and test this vaccin on humans. Though I am old-as they say, 79 years, female, suffering from Mg since the age of 16, Professor Verschuuren told me in april 201`5 that he expects that the vaccin will diminish my symptoms of MG. As mestinon in a high dose functions less and less well after taking it during almost 60 years, I do hope that in the end I will have a better life.

    Since 40 years I profit from a very nourishing nutrition, rich in protein, green leafy vegetalbes, fresh fruit and a lot of supplements especially choline and inositol. Until recent years I could parttime live an active life notwithstanding lesser energy and a lot of limitations. But I could obtain a doctorate in French literature at the University of Amsterdam, marry and adopt two sons. During 17 years I could teach Creative Writing but only parttime. I coiuld never obtain a drivers license as the coordination of my arms was not sufficient neither the energy to react quickly.

    I have suffered from every symptom of myastenia gravis and my life was saved in Intensive Care. My body does not tolerate corticosteroids or Mytelase.

    Well, our future may be better than forseen. My mother died at age 97 so perhaps I will be able to live some years with a minimum of symptoms. My brain is still functioning well.

    For more information, see: http://www.curavac.com, the company of dr.Stéphane Huberty, who lives an almost normal life since 2010.thanks to this vaccin.

    Up till 2018/ 2019 only patients who have been treated during the last years by Prof.Verschuuren here, can participate.
    I cannot change this though I am here a helper for patients suffering from MG.

    There is alos an excellent French Association where I function as soniapos. See http://www.myasthenia.com. There is a button for translations in English and in other languages.

    Sonja Pos, PHD, Amsterdam, The Netherlands, Europe, 25th of August 2015. (soniapos@xs4all.nl)

    Good luck to you all and please make the best of it. There is hope…

    Mrs. Sonia Pos, PHD, Amsterdam, The Netherlands

    Liked by 1 person

    • ladycamecu · August 25, 2015

      Thank you for updating me and sharing your story. I have only been enduring for 2 years but you give me so much hope. I will be sharing this will ally my friends and doing a great deal of research!

      Like

  2. dr.Sonja Pos · August 25, 2015

    Thank you Lady.But please remember: if all goes well in Leyde!!!

    P.S. Professor Jan Verschuuren has no time left to answer mails. You could contact http://www.curavac.com by the end of the year. Perhaps there will be some news. The whole project is scheduled till the end of 2018.

    I know how difficult it is to live with MG for 30% of the patients. Take care.

    KInd greetings. Sonia

    Liked by 1 person

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