It’s time to let the world get to know our amazing rare advocates! Each week I will be highlighting an advocate here in my blog as well as social media. If you would like to be featured in the spotlight, please click here.
Patient Advocate | Mollaret’s Meningitis
- Board Chair for Mollaret’s Meningitis Association
- From Hayden, ID
- Contact info: Email | Facebook | Twitter | Linked-In | Website
- Mollaret’s Meningitis affects approximately 600 people worldwide
Why did you become an advocate for your rare disease community? What was happening in that community that made you want to take action?
I was first diagnosed with viral meningitis at the age of 21. My second diagnosis of viral meningitis was at the age of 32. During that hospitalization an infectious disease doctor thought it was strange that I had viral meningitis more than once and ordered extra testing that confirmed herpes in my spinal fluid and gave me the diagnosis of recurring viral meningitis. After that diagnosis we realized that I had been experiencing regular viral meningitis since the original hospitalization. I had trouble finding good information about the disease with that name, but after seeing my neurologist he told me it was called Mollaret’s Meningitis and that is when I started to find others with this disease. There was no really good active support groups, so I started a Facebook support group which is now about 170 members. After seeing how many of us had this disease and had never been able to find good support, I founded the Mollaret’s Meningitis Association to advocate for us and get the word out to try and get more research to help us find a cure.
What was your first success or defining moment as a rare disease advocate?
My first success was founding the Mollaret’s Meningitis Association and hearing back from so many that it was helping them. The support group was helping people feel like they found others that understood their situation when they had felt alone with it for decades. Others told me how they believed the information available on the site helped them gain benefits from their government.
Share some of your biggest accomplishments as a rare advocate?
My biggest accomplishments are setting up an active support group where people feel heard and understood, founding the Mollaret’s Meningitis Association to help advocate, create awareness, and support research, and being able to find doctors interested in working with us to find more answers.
Share some of the hard realities you faced advocating for your rare disease.
The hardest reality is that there is so much misinformation out there, that doctors, insurance companies, and governments don’t have quality information about how disabling this disease really can be. Hearing so many patients talk about their doctors dismissing their symptoms and telling them there is no way they have Mollaret’s Meningitis because it is rare.
What project(s) are you working on now for your community?
We are currently about to hire our first Executive Director to run the day to day operations since we as patients don’t have the stamina to do that. We are building our medical advisory board to continue research into our disease, and we recently proclaimed the first Monday in May as Mollaret’s Meningitis Awareness Day worldwide. May 1, 2017 will be the first.
What advice would you give to an advocate just starting out?
I would say just start with one small thing, and move on from there. Don’t try to get everything in place before you start to do anything. Just move forward and adjust as necessary.
Why do you find working with advocates from different disease groups beneficial?
Working with advocates from other disease groups helps us avoid making a lot of mistakes they made starting up their organizations, and allows us to move forward faster. We can also help raise awareness of rare diseases as a group making us much louder.