She gives a voice to ALS patients

News

An angel and the words “ALS fighter” are tattooed on her left forearm. “I have the strength and the drive,” says Mia Möllberg about her role as patient representative in one of Karolinska’s care flows.

She says she "instantly clicked" with her neurologist – and he was the one who invited Mia to serve as patient representative in the flow group, which she immediately accepted.

"My experiences with the care at Karolinska have only been positive, but of course that may be related to my determination and my knowledge of my rights and obligations as a patient. Not everyone has the strength to cope the way I do," she says.
Now she will be their voice at the meeting table for the ALS flow under the Neuro Theme.

"I'm looking forward to this opportunity. Karolinska is doing a great service by providing patients with the opportunity to get involved in their care like this. Those of us who have ALS are a small group and it's difficult for us to reach out."

ALS is perhaps the most feared of all neurological diseases. There is no cure, but there are disease-modifying drugs that slow its progression. Sooner or later, patients who have ALS develop respiratory failure and die, usually within two to four years of diagnosis.

"But this applies to about half of all patients. I belong to the other half. Look at Stephen Hawking, who lived for 50 years! It isn't well known that many of us live a long time and it's important to get the message out," says Mia Möllberg.

The year after she was diagnosed, she started a Facebook group with three other patients. Today they have 1,900 members, which means that they reach out to most patients with ALS in Sweden. Mia dedicates considerable time supporting others in the contact network, including coffee meetings that are arranged every two to three months.

"Everyone who has ALS is affected differently and is in different stages. I'm in contact with some people who have had the disease since the early 1990s. They're important because they can give hope to newly diagnosed patients," she says.
She is paralyzed in parts of her body and needs an assistant around the clock. A total of ten people come to her home on a rotating basis, but they become like part of the family, she says.

"My life is just like everyone else's. Where I can't use my hands, I have my assistants to help me. I can't spend my time constantly thinking about being sick, because then life wouldn't be any fun. And it's important to live."

Mia Möllberg has many opinions on how people with ALS are treated in society and hopes that Karolinska can take the lead in improving the exchange of knowledge, from the first suspicion of ALS at the primary care center to palliative care at the end of life.

"There has to be cooperation from start to finish. If I call the primary care center for help with a cold, they don't want to see us, because they're so afraid of making mistakes. Meanwhile, of course our neurologists refer us to the primary care center for such simple matters."