Today marks the first day of VHL Awareness month.
Each May, we use this time as a community to connect, spread awareness, and celebrate VHL wins! This year, the VHLA is focused on telling our stories. Stories from patients and families about their experiences, challenges, and triumphs living with VHL, and stories about the VHL Alliances’ initiatives that are making an impact on the lives of VHL patients, families, and the clinicians that care for us.
Telling our stories creates awareness, drives more research, grows clinical interest in the disease, and increases our ability to fundraise to support the programs and initiatives that the VHLA provides to our community. All of which drives us towards achieving our mission of Curing Cancer through VHL. To kick us off, I’m excited to share a little about my journey with VHL.
In 1996, I was life-flighted to Children’s Hospital of Pittsburgh with a blood pressure of 240/120. After several tests and a brief mention of an aunt that previously had a tumor on her adrenal gland, I was diagnosed with a pheochromocytoma and a paraganglioma. It wouldn’t be for another 3 years, one more paraganglioma, and a diagnosis of metastasis to the bone later that I would officially be diagnosed with VHL.
At that time, the doctors told my mom I would likely not be able to walk at prom or drive a car. That news felt like a death sentence and it was terrifying. We were quickly referred to the National Institutes of Health, where I would officially be diagnosed with VHL, and where my family would be tested shortly after me. There’s now a total of 8 of us that have tested positive for the disease.
I wouldn’t meet another person with VHL outside of my family until I attended my first VHLA Family Weekend in October 2018. I walked away from that weekend overwhelmed, but inspired, and with a strong desire to more actively participate in the organization. I saw how much the Alliance did to support our community and I knew I could contribute using my patient and professional experience. The next year, I joined the board.
I have met so many amazing people through my experience with the VHLA that inspire me everyday and I hope my story can inspire you to get involved this month and beyond!
Here’s a few ways to get started:
- Share your story on social media with #vhlawareness. Be sure to tag the VHL Alliance channels in your post!
- Host a fundraiser.
- Support advocacy by speaking with your local politician.
- Participate in MyVHL at vhl.org/myvhl.
Grateful to the researchers and clinical teams that take care of us as patients every day. Hopeful because of the advances made in surveillance and treatment for the disease making that death sentence I received a long time ago a thing of the past. And proud of the VHLA’s leadership in program development, research funding, and supporting access to coordinated, quality clinical care.
I hope you’ll join us in spreading awareness throughout the month as we continue towards our mission of Curing Cancer through VHL. It has been such a pleasure to serve this organization and its community and I look forward to keeping our momentum going!
