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b"ONCE UPON A GENE - EPISODE 083\\n\\xa0Advocates Come in Small Packages - My Life With Blau Syndrome With Keira Howell\\n\\nKeira Howell is a twelve year old living with Blau Syndrome joining me to share her story of living with a chronic disease.\\n\\nEPISODE HIGHLIGHTS\\n\\nTell me about yourself.\\nI'm twelve years old and I have Blau Syndrome. I love to act, sing and do anything related to musical theater.\\xa0\\n\\nWhy would you like to tell your story?\\nI've done presentations at school, but want to expand the people who know my story through the podcast because it's a rare disease and I want to spread awareness.\\n\\nWhat is Blau Syndrome and what are the symptoms?\\nThe symptoms that affect me are arthritis, uveitis, rashes and swelling. Blau Syndrome is a whole body inflammatory disease and it can impact major organs like the kidneys, heart and liver and can be life-threatening. Someone with Blau Syndrome can be fine one day and have a flare up the next, so the disease can cause life-threatening problems very quickly.\\n\\nWhat's it like as a young person living with Blau Syndrome?\\nIf I'm going on a walk with friends or family, I tend to get sore. Riding a bike and gripping the handle bars, my fingers get very sore. When I play tennis, I have to wear wrist tape. Physical activities are what most affects me. Otherwise, it doesn't affect me physically. No one can tell I'm sick by looking at me.\\n\\nHow does your disease affect you at school?\\nBefore the pandemic, I was leaving school early more than once a week for stomach problems or being sore. I sat out of PE class often.\\n\\nWhat strategies help you stay positive?\\nWhenever I go to an infusion, instead of focusing on the negative, I find a positive-- I love my nurses, they give me candy, there's a vending machine with great snacks, my mom and I go to lunch after and we go get a treat. I always know there's a plus side to infusions or hospital trips.\\n\\nWhat have you done with the Cure Blau Syndrome Foundation?\\nWe had an auction a couple months ago to raise money for more testing and find a cure. I\\xa0 hosted a segment of Ask A Researcher which has interviews with doctors or researchers on community questions. It's exciting to be part of the foundation and I've met a lot of fantastic people.\\n\\nWhat do you hope to do with your life as an adult?\\nI hope I'm cured, spreading awareness, have a good education, a podcast, am an actress and just living life and traveling!\\n\\nLINKS & RESOURCES MENTIONED\\nCure Blau Syndrome Foundation\\nhttps://www.curebs.com/\\nAsk A Researcher on Instagram\\nhttps://www.instagram.com/p/B7wloz4lUMA/\\nDonate to Cure Blau Syndrome Foundation\\nhttps://www.curebs.com/donate-1\\nSeattle Rare Disease Fair Virtual Conference (2021)\\nhttp://rarediseasefair.com/?p=164\\n\\nCONNECT WITH EFFIE PARKS\\nWebsite\\nhttps://effieparks.com/\\nTwitter\\nhttps://twitter.com/OnceUponAGene\\nInstagram\\nhttps://www.instagram.com/onceuponagene.podcast/?hl=en\\nBuilt Ford Tough Facebook Group\\nhttps://www.facebook.com/groups/1877643259173346/"