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  • Introduction

    Posted by julia-ayerbe on March 14, 2018 at 6:26 am

    <span style=”color: #777777; font-family: ‘Open Sans’; font-size: 13px;”>Hi, my name is Julia, I am Brazilian, I have 35 years old, and now I am living in Madrid, Spain, to study a Master Degree in Contemporary Art History. I work as editor of art books. I have SMA type III since I was a child, but I was dignosed wheen I was 19. I use to be very tired and I have hard time with stairs and long walks. I am not in a wheelchair yet. I am single and have no children, but I am thinking about it, since I am 35. I am very curious about Spiranza, I read that many of you started the treatment. In Brazil is super expensive, and also in Europe.  Very happy with this channel of communication. Hope to talk more with you guys,</span>

    kevin-schaefer replied 6 years, 1 month ago 3 Members · 2 Replies
  • 2 Replies
  • deann-r

    March 14, 2018 at 9:28 am

    Nice to meet you Julia!  Welcome to the forums.  Your field of study sounds very interesting.  Although I appreciate the arts I’m not very knowledgeable on the topic.

    I think it’s great you’re still pretty mobile and are thinking of starting a family at some point.  Several individuals with SMA have done just that.  It’s not something I personally have experience with.  As with everything in life I’m sure it has its challenges.

    What I do have some experience with is Spinraza.  My fifth dose is coming up.  I describe it as hitting the pause button on SMA.  As time goes on I hope the cost goes down and it becomes more readily available across the globe.  Currently many countries are putting restrictions on who can receive it.  Biogen, the pharmaceutical company, just put out a report indicating it is beneficial for older patients as well and not just for type 1, so that’s a step in the right direction.

    Feel free to ask more questions.  We love hearing from you.  Have a good day (or night)!

  • kevin-schaefer

    March 14, 2018 at 11:39 am

    Nice to meet you Júlia! Thanks for joining us here.

    Your career sounds really interesting. I studied English in college and I write comic book scripts on the side, so I have an interest in pretty much anything related to the arts.

    That’s also great you are interested in possibly starting a family sometime in the future. Echoing what DeAnn said, there are plenty of SMA individuals who are married and have kids. I’m still young, so that’s not really on my radar right now, but know that it’s definitely possible.

    I also have started Spinraza, and I’m happy to answer any questions you have in regards to the treatment. Hopefully the price will go down eventually!

    Thanks again for posting, and feel free to reach out to me or anyone else here.



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