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  • For all of you LEMS Moms & Dads

    Posted by dawn-debois on January 7, 2020 at 9:00 am

    I have such immense respect and admiration for the parents of LEMS patients I have come to know. Your child joined a “rare disease club” that nobody ever imagined. Your resiliency and resolve to learn about LEMS and advocate for your child is inspiring. What advice would you give a parent whose child was just diagnosed with LEMS?

    rafael-flores replied 3 years, 8 months ago 3 Members · 2 Replies
  • 2 Replies
  • zoey

    Member
    March 12, 2020 at 1:53 am

    Have patience. You will need plenty of it for your child, other family members and friends. People know very little about this disease. They could be annoying with their questions. There was a time when it was believed that only older people could have this problem. I first heard of autoimmune problems in a chemistry class from an undergrad textbook, Introduction to General, Organic and Biochemistry. Who knew that I would be forced to know and understand more about such problems a few years later. The usual emotional upheaval and difficulties are to be expected; especially as a child is involved. I have now learnt to mine deep into myself for patience. Find that pool inside you – it will help.

  • rafael-flores

    Member
    March 13, 2020 at 2:28 pm

    Ciertamente el día a día con un niño con LEMS es extremadamente duro. Los padres debemos llenarnos de mucha paciencia y fortaleza espiritual. Tenemos que lidiar con la incertidumbre del futuro sobre todo que se sabe poco del desenvolvimiento de la enfermedad en el desarrollo y adultez del adolescente. Me quedo grabado una frase que me repetía su medico “se vive un día a la vez”.

    Google Translate:

    Certainly the day to day with a child with LEMS is extremely hard. Parents must be filled with a lot of patience and spiritual strength. We have to deal with the uncertainty of the future, especially since little is known about the development of the disease in adolescent development and adulthood. I was recorded a phrase that his doctor repeated to me "you live one day at a time"

     

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