The Rare Disorder Podcast

In this episode, I interview Lindsey Kizer, a fighter of Narcolepsy. Lindsey Kizer is a Carolina native from Belmont NC that loves to bake, listen to live music, spend time in her garden and with her husband and rescue pup. She was diagnosed with Narcolepsy at 29 after living with many of the symptoms for over 15 years. After being diagnosed she also was diagnosed with Fibromyalgia and Dysautonomi. She is now sharing her story to help raise awareness so that others do not have to go through the struggles she did.

Follow along on her advocacy journey!

Instagram: https://www.instagram.com/onceuponad.r.e.m/

Twitter: https://www.twitter.com/onceuponadrem

In this Podcast, I interview Robin, who is a fighter of a rare Polygenic Disease, "Polygenic Mutational Syndrome of Methylations." Learn about this rare condition, and hear her story!

In this episode, I interview Leeya, who is a fighter of Generalized Lymphatic Anomaly. Leeya is a honest person who at 20 years old, has been through a lot in 5 years. At 15 years old, she went down the path to find out what was wrong. Leeya was diagnosed with Generalized Lymphatic Anomaly (GLA) during the first semester of sophomore year of high school. Since then, her family and her have been on a crazy but incredibly rewarding journey. Rewarding in the fact that they love advocating and Leeya, herself, has found a deep passion for wanting to pursue a career in hospital administration.

Follow along on her advocacy journey! 

Instagram: https://www.instagram.com/leeyas.story/

TikTok: https://www.tiktok.com/leeyas.story/

In this episode, I interview Emily, who is a fighter of Short Bowel Syndrome and Intestinal Transplant. Emily Parks is a chronically ill young professional based out of the Washington D.C. area working in behavioral health and patient advocacy. Having been diagnosed with short bowel syndrome in infancy and unable to absorb nutrition orally, she was dependent on Parenteral Nutrition until receiving an isolated small bowel transplant from MedStar Georgetown University Hospital. Combining her expertise in behavioral health with her lived experience of navigating multiple tertiary hospitals firsthand has led her down the path of studying the impact of medical trauma and medical PTSD on patients and their treatment outcomes as well In preparation for a PhD in medical trauma, Emily founded the organization POP!, where she hosts patient lead discussion groups on all things medical PTSD related in an effort to learn what providers need to know about the mental health side of the patient experience.

Keep up with her advocacy journey! 

Website: popmedicalptsd.org 

Instagram: https://www.instagram.com/pop_medicalptsd/

In this episode, I interview Marie, who is a fighter of Multiple Hereditary Exostoses. ​Marie D.L. is an artist, motivational speaker, journalist, digital creator, and Patient Advocate Leader that has been in the media for almost a decade, and uses her skills and expertise to help others grow their advocacy or organizations. She is the founder of R.A.R.E. by Marie D.L. and the creator of The R.A.R.E. Community. Through R.A.R.E. and The R.A.R.E. Community, she seeks to empower and spread visual representation of medical conditions. The R.A.R.E. Community is a social networking site she created that is separate from all other social media platforms, and is meant to connect warriors with a chronic, invisible, mental, or rare disease. She made The R.A.R.E. Community to be a safe place for patient advocate leaders who want to meet others with similar conditions in a positive environment, while keeping divisive and harmful topics not related to accessibility out. She offers graphic and other creative services,  AV production, as well as professional collaborations as a way to put a name and face on disability. Her personal advocacy work focuses on sharing the experiences of a disabled woman in the media.  

Keep up with her advocacy journey!

Instagram: https://www.instagram.com/r.a.r.e.advoc8/

Website: www.rareadvocatesrepresentingeveryone.com

In this Podcast, I interview Rifa, who is a fighter of Dysgraphia. Learn about this rare condition, and hear her story!

Rifa is an avid food blogger, a finance enthusiast, and a rare disease advocate. 

In this episode, I interview Lindsey, who is a fighter of CLOVES Syndrome. Lindsey is a 26 year old CLOVES patient that was initially diagnosed with Klippel Trenaunay Syndrome, another PROS condition. She currently lives in Dallas and is finishing up her Master’s degree in theology. Her interest in theology of suffering and flourishing is rooted in her journey as rare disease patient with recurrent health complications and challenges. She’s an AllStripes ambassador and CLOVES Family Advisory Council member who loves serving the rare disease community. CLOVES Syndrome is an ultrarare condition that is a recently described rare disorder characterized by tissue overgrowth and complex vascular abnormalities. It is extremely rare, only affecting 150 people worldwide.

Keep up with her advocacy journey! 

Instagram: https://www.instagram.com/edwards_linds/

Twitter: https://www.twitter.com/edwards_linds/

Blog: https://growinginthegroaning.com/

In this episode, I interview David, who is a fighter of Cowden Syndrome. David Ross is a patient advocate and rare disease male mental mental health collaborator. David's activism began in 2017 when he was diagnosed with a rare disease called Cowden Syndrome due to being given a letter from his mother about getting tested before she passed away due to having the same condition.

After a period of coming to terms with this he became committed to raising awareness and supporting others impacted by this condition by helping set up a support group and also applying to join the Pten Foundation International Family Council which looks to helping my rare disease community by raising awareness about Cowden Syndrome.

In 2020 he attended 3 virtual Eurordis rare disease schools and is currently on the Findacure mentoring program. His latest project has been to set up rare disease male mental mental health International zoom calls for patients and caregivers and has set up an online support group on facebook for males in 2021. 

Some of David's honors have been the following: Find a Cure Mentoring Program (2021-22), Find a Cure Mentoring Program (2020-21), Male Mental Health International Zoom Calls (2020-Present), Eurordis Digital School (2020), Eurordis Summer School (2020), Eurordis Winter School (2020), and Clinical Trail Boston Children's Hospital (2018-19).

Follow along on his advocacy journey!

Email: [email protected]

Facebook: https://www.facebook.com/groups/991558431661517/

In this episode, I interview Jemma, who is a fighter of Hyperacusis. Jemma is 17. She has lived with hyperacusis since she was six years old. Jemma also has several other medical conditions, including being legally blind. Growing up, Jemma’s childhood has been very different from most kids. She has been unable to attend social events, go to the store or most public places, listen to music, wash dishes, go on vacation, or even take showers because the noise causes her extreme physical pain and lingering migraines. Her goal is to help raise awareness about my rare condition, hyperacusis and other rare disorders/chronic pain conditions, put in place laws to accommodate those with hyperacusis, and push for more research to be done on hyperacusis. She has started her own organization to bring awareness to Hyperacusis. In addition to advocacy work, she enjoys writing and plans to become a full-time writer/author as a career.

Keep up with her advocacy journey!

Blog: https://hyperacusisawareness.wordpress.com/

Linktree: https://linktr.ee/Jemma_Rosewater

Instagram: https://www.instagram.com/hyperacusis_awareness/

In this episode, I interview Megan, who is a fighter of 2q37 Deletion Syndrome. Megan Freeman started her rare disease journey when she was diagnosed with one at 16, dealing with all of the emotions that come along with having a rare disease and trying to come to terms with it to the best that she can. A little over two years ago, she got introduced to rare disease advocacy when she met some people near and dear to her in the rare disease world. She has designed blank greeting cards with onions, to raise awareness about her condition, as suggested by one of her friends who is an artist. Since then, she has also been on a few podcasts to raise awareness about her very rare disease and to help break stigmas that are associated with having a rare disease along the way. 

Keep up with her advocacy journey! 

Instagram: https://www.instagram.com/cardc.urator/

Card Website: https://megancardcurator.squarespace.com/