Mama health supports patient associations by valuing patients' stories and challenges, empowering them to learn from each other.
In 2022 Morena Colombi, admin of the largest Italian Facebook group on Long Covid and then President of AILC (Italian Association for Long COVID) was in search of a better solution to advocate for the numerous members joining her in the quest for support. In a few months, Morena brought together more than 40 thousand people reporting long-term effects after the COVID-19 infection.
How it started
Patients dealing with Long COVID often face skepticism from medical professionals, and sometimes even their family members who overlook their symptoms. This affected the credibility of their experiences and limited their ability to get heard and improve the healthcare system. Morena Colombi's support group was one of the few resources available to them, but she had limited time and resources to provide significant help. Public institutions reached out to Morena over the months to understand better how people with Long COVID were feeling, but Morena could only report a few of the experiences she heard from the people closest to her. There was a clear need to make those voices louder and improve the system.
A new digital platform
Mama Health saw the need to elevate the patient association's influence beyond its limitations and decided to support Morena Colombi to organize the group in a meaningful way. mama health gave Morena the tools she needed to organize the experiences of their members in a dashboard, collect donations and membership fees, map the Long COVID centers in Italy, and organize weekly online sessions for patients to meet others like them. Through Mama Health, Morena was even able to send a poster to many Long COVID centers so they could spread awareness of the association.
The new AILC
As the association joined Mama Health, it gained more importance and was able to:
- Raise awareness: Morena's compelling story, echoed by many other patients is building awareness across Italy.
- Collaborate with research institutions: the experiences collected were helpful for doctors and researchers interested in learning more about the Long COVID patient journey
- Engage with medical experts: Doctors and researchers started to actively participate in video conferences with patients on the platform, delivering updates and insights on Long Covid.
- Thriving Patient Community: Many more people requested to join the association to contribute and get valuable insights to deal with their Long COVID in the day-to-day.
Morena's thoughts
The success achieved has exceeded all of Morena's expectations. She expresses gratitude for the help and support received, saying:
I wouldn't have known where to start without the assistance of mama health, the way the platform was created and the organization and communication of events are excellent because it's user-friendly and accessible to everyone. It's very well set up, so anyone who joins immediately understands what we're about. You have been super effective; overall, I would describe it as fantastic!
Morena used to say:
We're an open book, but nobody is reading us...
With mama health, she hopes the book can be properly edited and published in the world of science, which can finally understand the needs of the patients and address them.
Most Common Comorbities
The term comorbidity refers to the presence of one or more health conditions in addition to a main disease. In the case of myasthenia gravis, comorbidities are other medical conditions that a person may have along with myasthenia gravis. This helps us understand that each person has their own unique story, made up of personal experiences that need to be listened to and understood. The relationship between myasthenia and other diseases can go in both directions. Some diseases may develop because of myasthenia, while others may already be present and affect how myasthenia gravis develops or progresses. The connection between myasthenia gravis and other diseases is complicated and depends on various factors, such as genetics, environment, lifestyle, and medical treatments. Here are the most commonly reported comorbidities by the patient community:
✋Discover the most common treatments and more
- Detailed information on myasthenia
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- The chance to find qualified centers and specialists in myasthenia
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