Cerebral Cavernous Malformation With Elizabeth From Oregon and Allison from DC

Send us Fan MailGuest(s): Allison & ElizabethEpisode SummaryIn this episode of Rare Connection, I’m joined by twin sisters Allison and Elizabeth, who both have familial Cerebral Cavernous Malformation (CCM)—a rare genetic condition that causes clusters of abnormal blood vessels in the brain and spinal cord. They share their personal diagnosis journeys, how CCM has impacted their lives, and the ways they manage symptoms and advocate for awareness.Topics Covered:✅ How Allison & Elizabeth were diagnosed with CCM ✅ Symptoms, treatments, and lifestyle adjustments ✅ The genetic and family impact of CCM ✅ Nutrition and diet considerations for managing symptoms ✅ Advocacy, research, and the future of CCM treatmentLinks & Resources:🔗 Follow Rare Connection:Facebook: [Page](your page link) | [Group](your group link)X (Twitter): [@yourhandle](your Twitter link)LinkedIn: [Your LinkedIn](your LinkedIn link)🔗 Watch & Subscribe:YouTube (Rare Chef): [Subscribe here](your YouTube link)Podcast (Rare Connection): [Subscribe on Apple](your Apple Podcasts link) | [Spotify](your Spotify link) | [Other Platforms](your podcast link)💬 Join the Conversation:Watching on YouTube? Comment below!Listening on another platform? Click the "Send me a text" link here: [Your text link]💙 Support the Show: Want to help keep Rare Connection going? [Support the show here](your support link).Suicide Prevention & Crisis SupportIf you or someone you know is struggling, help is available. 📞 Call or text 988 for the Suicide & Crisis Lifeline (U.S.) 🌎 If outside the U.S., please reach out to local crisis resources—you are not alone.Chapter Markers0:00:00 Intro0:01:41 Alison's Diagnosis story0:03:55 Allison is misdiagnosed with Thoracic Outlet Syndrome0:05:01 Elizabeth's diagnosis story0:09:27 Fanily genetics and CCM0:13:44 CCM effect on daily Life (Allison)0:17:15 CCM effects on Daily Life (Elizabeth)0:20:27 Allison's similar symptoms to Elizabeth0:22:36 Elizabeth takes vitamin K0:24:45 Allison's surgery for a hemorrhage right vefore taking the bar exam0:30:15 Thickened diet during surgery to prevent aspiration0:34:42 Alliance To Cure Cavernous Malformation0:35:37 standard of Care for CCM0:36:02 Centers of Excellence for CCM0:36:55 Clinical trial Recosian Pharmeceuticals0:39:47 CCM variants0:46:17 Elizabeth's Care Plan0:51:42 Alison doesn't hace a care plan0:53:59 Allison on future generations0:56:06 Elizabeth' on future generations0:57:32 Allison on diet &CCM1:03:09 Elizabeth on diet & CCM1:12:35 Allison on challenges in proper treatment for CCM1:21:21 Ekizabeth on challlenges in prioer trearmebt fir CCM1:26:37 missconceptions about CCM1:32:57 How you can support the CCM community Allison1:38:54 How you can help Elizabeth1:43:03 tips for overheating1:46:44 How being a twin has influenced the journey with CCM Allison1:49:37 Elizabeth how being a twin influenced the journey with CCM1:51:48 Advice to others on coping with a rare disease Allison1:55:57 Advice to others on coping with a rare disease Elizabeth1:59:39 Hopes for CCM research & treatment Allison2:04:32 Hopes for the future Elizabeth'2:06:40 Ways to get drugs to be affordable2:09:13 conclusionSupport the show