• Anonymous Questions

    Posted by Ashley on July 13, 2020 at 9:53 am

    Hey all!

    I know there are some topics that can be sensitive that you may want to ask others about. I would love to post your questions anonymously  if you message them to me, I will post as a new topic and keep your name a secret! Looking forward to being able to post some of your more sensitive topics and hearing from you all.

    price-wooldridge replied 3 years, 9 months ago 3 Members · 4 Replies
  • 4 Replies
  • rafael-flores

    Member
    July 14, 2020 at 1:41 pm

    For my 20 year old son the most frequent question: What should he expect from this condition in the future? His adolescence was very hard and difficult, today although he has recovered a good part of his life he has certain limitations with the fatigue and weariness that LEMS generates. We hope that in the future new medical advances will appear that will improve your condition.

    Traducido usando https://translate.google.com/

  • price-wooldridge

    Member
    July 15, 2020 at 1:48 pm

    Hola Rafael,

    I understand LEMS more frequently strikes older people, and getting LEMS for younger people is not so common.  I do not have your answer yet, but will ask the LEMS community.  Thank you!

  • Ashley

    Member
    July 17, 2020 at 7:17 am

    Hola Rafael,
    I also was diagnosed at a young age, I was 26 when I was officially diagnosed with LEMS (Will be 30 in a few months). I don’t have an exact answer for you on your question sadly. LEMS is not considered a progressive disease, so it shouldn’t worsen with age but many don’t know the answer since it is so new and rare. Young LEMS patients are even rarer than “older” LEMS patients and most often the LEMS in these patients is caused by au autoimmune issue instead of small cell lung cancer. My LEMS seems to be autoimmune related because I have been diagnosed with several other AI issues and have had clear scans thus far.

  • rafael-flores

    Member
    July 17, 2020 at 9:32 am

    Gracias Ashley por tu pronta respuesta!!!

    Realmente ha sido difícil transitar este camino de LEMS con mi hijo. Gracias a Dios hasta ahora el no ha presentado ninguna otra enfermedad asociada a la condición. Por ahora la enfermedad está estable y desde hace mas de dos años no ha tenido crisis. Esperamos pronto hacer su primera sesión de inmunoglobulina para ver como le va, aunque su medico nos ha indicado que solo 50% de los pacientes tienen una respuesta positiva a este tratamiento. Lo difícil para él ha sido el rendimiento diario en sus actividades debido al cansancio y por supuesto esta situación le genera mucha incertidumbre de cara al futuro. Actualmente vive en España y debido a su condición no le ha sido fácil conseguir un trabajo adaptado a su realidad. En tu caso a que te dedicas? en que trabajas?

  • price-wooldridge

    Member
    July 17, 2020 at 11:26 am

    Ashley, here’s the translation I did on Google translate.

    Thank you Ashley for your prompt response !!!

     

    It has really been difficult to walk this LEMS path with my son. Thank God so far he has not had any other illnesses associated with the condition. For now the disease is stable and for more than two years it has not had a crisis. We hope to do your first immunoglobulin session soon to see how it is going, although your doctor has indicated that only 50% of patients have a positive response to this treatment. The difficult thing for him has been the daily performance in his activities due to fatigue and of course this situation generates a lot of uncertainty for the future. He currently lives in Spain and due to his condition it has not been easy for him to get a job adapted to his reality. In your case, what do you do? What’s your job?

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