As we continue our interview series commemorating our 30th anniversary, this week we sit down with Roxana Ramos, the Hydrocephalus Association’s (HA) support group leader in South Florida. Roxana’s brother, Jorge Corvo, was diagnosed with hydrocephalus at 6 months of age due to complications at birth. He is forty-seven years old and has undergone multiple shunt replacements throughout his life, with the last one changing his shunt to a programmable valve. This was a very welcomed change for him, as it removed the need for emergency surgery in cases where he only needs an adjustment to the valve. Roxana sits down with Jennifer Bechard, our Support Group Liaison, and shares her motivations for leading a support group and her relationship with the Association.
HA: How did you find HA and why did you decide to start a support group?
ROXANA: I wanted to connect my brother with other people that have hydrocephalus. I started to do some research on the internet, which is how I found HA. I contacted HA to see if they had a local support group or chapter in my area. They told me they did not have one, however they suggested I could start a support group. In 2011, the Hydrocephalus Association helped me launch the first support group in the South Florida area and, with their help, I have been able to network, connect and communicate the group to the hydrocephalus community.
HA: Why do you feel support groups are important to the hydrocephalus community?
ROXANA: I started the group to help my brother, and in the process I realized that the support group helps family members just as much as the patient with hydrocephalus. You establish bonds and relationships with people that are experiencing the same challenges, but also share success stories that are encouraging and provide hope and inspiration to everyone.
HA: Has leading a support group made an impact in your life or your family’s life? If so, how?
ROXANA: I can truly say that leading the support group is one of the most rewarding things that I have done in my life. It fills my heart with joy when I am able to help someone by guiding them to a resource within the Hydrocephalus Association or simply telling them that we are in this together and give them comfort and support. It also has been very rewarding to see my daughters get involved in the group and participate as a family.
HA: What is one of your favorite moments/memories from a past support group meeting?
ROXANA: One of my favorite moments from a support group meeting was at the end of my first meeting; my mother came to me and thanked me for doing this for my brother. She has been my brother’s full time caregiver and I feel that in starting this support group, I am also helping her because she has been able to meet other mothers who are in the same situation as she is. I also remember receiving a very sweet note from one of the support group participants thanking me for putting the group together.
HA: Of all the work HA does for the hydrocephalus community, what do you feel is the most important/impactful?
ROXANA: I find that the research and information that HA provides is invaluable as well as the efforts that HA makes on a daily basis to bring awareness and support for hydrocephalus patients at the government level.
HA: Where would you like to see HA 5 years from now
ROXANA: I would like for HA to extend their reach outside the U.S. Being in Miami, FL, I have received several calls and emails from individuals in Latin America asking for help or direction. Also, I would like for HA to help us build a network of organizations in the community that can sponsor our group meetings. It was quite difficult for me at the beginning to obtain the use of facilities and/or meeting space
HA: What message do you have for other individuals, family members and caregivers in the hydrocephalus community?
ROXANA: Never give up, never give up, and never give up. And, the most terrible limitations a human being can have, are the ones that he creates himself, in his mind.