Cerebral Cavernous Malformation With Elizabeth From Oregon and Allison from DC

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Guest(s): Allison & Elizabeth

Episode Summary

In 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 treatment

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Chapter Markers
0:00:00 Intro
0:01:41 Alison's Diagnosis story
0:03:55 Allison is misdiagnosed with Thoracic Outlet Syndrome
0:05:01 Elizabeth's diagnosis story
0:09:27 Fanily genetics and CCM
0:13:44 CCM effect on daily Life (Allison)
0:17:15 CCM effects on Daily Life (Elizabeth)
0:20:27 Allison's similar symptoms to Elizabeth
0:22:36 Elizabeth takes vitamin K
0:24:45 Allison's surgery for a hemorrhage right vefore taking the bar exam
0:30:15 Thickened diet during surgery to prevent aspiration
0:34:42 Alliance To Cure Cavernous Malformation
0:35:37 standard of Care for CCM
0:36:02 Centers of Excellence for CCM
0:36:55 Clinical trial Recosian Pharmeceuticals
0:39:47 CCM variants
0:46:17 Elizabeth's Care Plan
0:51:42 Alison doesn't hace a care plan
0:53:59 Allison on future generations
0:56:06 Elizabeth' on future generations
0:57:32 Allison on diet &CCM
1:03:09 Elizabeth on diet & CCM
1:12:35 Allison on challenges in proper treatment for CCM
1:21:21 Ekizabeth on challlenges in prioer trearmebt fir CCM
1:26:37 missconceptions about CCM
1:32:57 How you can support the CCM community Allison
1:38:54 How you can help Elizabeth
1:43:03 tips for overheating
1:46:44 How being a twin has influenced the journey with CCM Allison
1:49:37 Elizabeth how being a twin influenced the journey with CCM
1:51:48 Advice to others on coping with a rare disease Allison
1:55:57 Advice to others on coping with a rare disease Elizabeth
1:59:39 Hopes for CCM research & treatment Allison
2:04:32 Hopes for the future Elizabeth'
2:06:40 Ways to get drugs to be affordable
2:09:13 conclusion

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1. Cerebral Cavernous Malformation With Elizabeth From Oregon and Allison from DC (00:00:00)

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3. (Cont.) Cerebral Cavernous Malformation With Elizabeth From Oregon and Allison from DC (00:14:38)