Thank you for all this tips! I will try and let you know. Hugs 🙂

Hi, I just bough an IPhone after years using an Android. I needed a smaller an lighter device, so I bought the new SE. I was wondering if you have any accessibility tips for IPhones 😉

Hi DeAnn, thanks for your answer :). I am trying to not take a pain reliever, but if it gets worth I will. Maybe it is another thing, sometimes when you have a disease like SMA, everything that happens with your body, you connect with it…

Hi all, I started taking Spinraza in February. Since my last injection, three weeks ago, I´ve been feeling a lumbar pain that doesn´t go away. I read that the side effects usually disappear in a week, I will talk with my doctor, but I also would like to know if any of you experienced a long period of side effects from the injection. Thanks 🙂

Thank you all for your words, they help me a lot. Since today I no longer feel the side effects of the injection and I am very happy and peacefull to continue on this journey. 🙂

Hi all, yesterday I got my first dose of Spinraza. I waited three years for this treatment, and I am very glad and excited with my first injection. Anyway, since yesterday I´ve felt very tired, and I am also a little bit anxious to feel any effect from the medication. I know many of you take Spinraza for years, do you have any advice? Thank you <3

Hi Flavio, I´m type III, also from Brazil, but I live in Spain.

Hi Alyssa, I use to drink green juices every morning, with spinach, celery, carrots, apple. I also have constipation problems, and I think it helps, and also not eating too much gluten. Anyway, constipation is a hard issue… but I think the juices are a good ally.

Hi Alyssa, thank you for your reply :). I think you are right, I´ve been more carefull about my hydration and I didn´t have any spasm or cramp in the last days, thank you for the advice! Anyway, it will be nice to understand more, why these spasms os cramps are frequently in the abdomen area (sometimes happens when I am laughing, or when I make… Read more

Hi everyone, have any of you experienced attacks of cramps and spasms in the summer? I usually have cramps, a lot in the abdomen area, but in the summer they intensify with a lot of spasms … I am wondering if there is something I can do, it is very unconfortable

Hi Brianna,

There is Jillian Mercado, I don´t know if you already known her 🙂 https://www.instagram.com/jillianmercado/

Hi Mike, very happy to hear from you! I am curious about your treatment with Spiranza, since I am SMA III too.

<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… Read more