Frederica, 28, was diagnosed with MS in 2007. It is relapsing-remitting MS, and her health is still good. Since diagnosis Frederica has become an active member of AISM, she volunteers at a hospital, fundraises and is on the governing board of her local MS society branch. Her major challenges in coping with the disease are in keeping a positive attitude and accepting that MS is part of her life.
MS has had a big impact on my social life. I get angry and I feel like the problems other people have are minor compared to living with this disease. I feel disadvantaged, my life is so different from my peers.
My name is Frederica, I’m 28 and I was diagnosed with MS four years ago.
At the moment, I feel good. I don’t have any physical problems, really. I have relapsing remitting MS, so the symptoms come and go. When I feel ill, I get fatigued and numbness in my arms, and I have to take more time and more energy moving and getting things done. But it is not so bad, yet. I still play tennis and guitar.
I live with my parents in northern Italy, in a rural area southwest of Bologna. In March, I graduated from the University of Bologna with a degree in law, and now I work as an intern in a local attorney’s office. I haven’t told them I have MS, because so far I don’t need any modifications at work.
The biggest impact on my life has been on my mental health and my happiness. I get really angry, I often think other people’s problems are so minor, in comparison. MS has also affected my relationships. At least my parents don’t treat me any differently, they aren't invasive, they’re pretty good about it.
The first time I had a relapse in 2006, I had to stop my studies for some months. Luckily, we have a good health system, we have easy access to treatments. I’m taking interferone and it’s ok. There are other choices, but for now I’ll stick with it. Otherwise, I just eat lightly, and sleep a lot!
People with MS can also get therapy and also psychological support through the local health services, and you can get complementary therapies like acupuncture, but you usually have to pay. At least Aism offers them for free.AISM
(the MS Society) is a really valuable support organization for people with MS and their families. It provides services, promotes scientific research, advocates for people’s rights, provides information about MS and does outreach to people living with MS. Maybe about half of people with MS use their services for one thing or another, it has a high level of visibility. It also supports young people, and it has volunteers who have MS, as well as those who don’t. Sometimes AISM works with the MS International Federation, for instance to publish in scientific journals or in collaborative projects.
Because Italy is an old country, most of the cities and buildings are ancient. They aren’t easily accessible. This is a big problem for people with MS.
I’m involved in AISM’s young programme and help out in the Infopoint at the hospital. The biggest reward for me has been sharing my experiences and making friends, and I’ve also learned a lot about the disease. Aism has really helped me accept it. Now I am on the board of AISM Forlì-Cesena and help with fundraising.
One of the main problems is infrastructure. Because Italy is an old country, most of the cities and buildings are ancient. They aren’t easily accessible. Isolation and getting around are major issues for people with MS. I also think drug companies and the state bureaucracy are two of the greatest obstacles when it comes to new drugs. The protocol for registering new drugs is a long, difficult process.
Another issue is financial support. People with MS in Italy are lucky, compared to other countries, but government subsidies are being cut, there is less every year. Given the social context, the government could do more.
For other people with MS, I have this advice: by strong and fight! For governments and locals authorities, I would tell them: learn more about MS and improve services so people can exercise their rights.