Community & Resources

Communities

Having a support group is extremely important if you have MS, or any disease for that matter. Since I’m in Sweden and my Swedish is not that advanced, I found it difficult to find a support group. Add to that the Swedish way of keeping things to themselves.

Anyway, I found some Facebook groups that prove to be useful. I do not participate actively, but read people’s experiences from time to time, especially those who are on the same medication as I am. I am currently on Tysabri, but would love to switch to the new oral pill Tecfidera soon. I am JC virus positive, so I cannot stay on Tysabri after more than 24 treatments. I just started on January 2013.

I am a naturally curious person, so it’s been interesting to read people’s reactions and experiences while on these medications:

• Tysabri Support Group
• Oral Tecfidera Support Group

Now one must keep in mind that not all MS relapses are the same, and that people have different reactions and experiences.

I also consider myself as still “young”, and have different priorities and concerns as a young person, as opposed to a 50-60 year old retiree. I’m talking about making plans, staying on the job, traveling, the future.

• Young People with MS
• Young People Living with MS

Resources

• National MS Society
• Tysabri website
• Tecfidera website

Got more suggestions for resources? Feel free to contact me.