#SMA Awareness Month Spotlight: Meet Miles! Miles and his mom (@rare_mamas) are dedicated members of our Behind the Mystery community, and we’re thrilled to share one of Miles’ incredible achievements this summer! Miles competed in a USTA wheelchair tournament—and won! 🏆 Join us in celebrating Miles and all the #SMA warriors. Let’s continue to raise awareness for a cure, better treatments, and more opportunities, this month and beyond! #BehindTheMystery #RareDiseaseAwareness #SpinalMuscularAtrophy #SMA #SMAawareness
Behind the Mystery
Health, Wellness & Fitness
Deerfield Beach, Florida 1,452 followers
Behind the Mystery is the first and only TV series devoted to raising awareness about rare and genetic diseases.
About us
Behind the Mystery™ is the first and only television series dedicated to raising awareness about rare and genetic diseases through powerful patient storytelling. Each episode delves into the personal journeys of individuals and families affected by these conditions, highlighting their struggles, triumphs, and daily realities. By sharing these intimate narratives, the series aims to educate the public, inspire empathy, and advocate for better research, treatments, and support systems. Behind the Mystery not only sheds light on the medical aspects of rare diseases but also celebrates the resilience and strength of the human spirit. Join us weekday mornings on Lifetime®.
- Website
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https://thebalancingact.com/category/behind-the-mystery/
External link for Behind the Mystery
- Industry
- Health, Wellness & Fitness
- Company size
- 51-200 employees
- Headquarters
- Deerfield Beach, Florida
- Type
- Public Company
- Founded
- 2012
- Specialties
- Health, Medicine, Genetics, Disease, Advocacy, Rare Disease, Medical, Chronic Illness, TV Show, and Undiagnosed Diseases
Locations
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Primary
3860 N Powerline Rd
Deerfield Beach, Florida 33073, US
Employees at Behind the Mystery
Updates
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Hear from Rhonda Rowland VP of Wilson Disease Association, as she discusses the evolution of treatment options and the WDA's role in fostering partnerships between patients, physicians, and the pharmaceutical industry. The WDA aims to improve Wilson disease patients' quality of life through patient assistance programs, access to specialists, and fostering a supportive community. Watch the full story on TheBalancingAct.com/rare *Sponsored by Orphalan* #TheBalancingAct #BehindTheMystery #WilsonDisease #WilsonDiseaseAwareness #RareDisease #Orphalan #RareDiseaseAwareness
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Dr. Naseem Amin, CEO of Orphalan, recognized the need for investment and research in Wilson disease treatment. This led to the development of CUVRIOR (R) (trientine tetrahydrochloride), the only FDA-approved therapy in Wilson Disease in nearly 30 years. This treatment offers twice-daily dosing and a non-refrigerated option for long-term maintenance. Watch the full story on TheBalancingAct.com/rare INDICATION CUVRIOR is a copper chelator indicated for the treatment of adult patients with stable Wilson Disease who are de-coppered and tolerant to penicillamine. IMPORTANT SAFETY INFORMATION · Do not use CUVRIOR if you are allergic to trientine or to any of the ingredients in CUVRIOR. · Your Wilson’s Disease symptoms could get worse when you start treatment. This could happen because too much copper is removed from the body in a short period of time. Your doctor may need to reduce your dose or stop CUVRIOR treatment. · Copper deficiency may develop following treatment with CUVRIOR. Your doctor will do tests to monitor your urine and blood for copper. · Iron deficiency may develop while taking CUVRIOR. If this happens, your doctor may tell you to take iron supplements for a limited time. · Allergic reactions, such as a rash, have been reported with trientine, the active ingredient in CUVRIOR. If a rash or other allergic reaction occurs, stop taking CUVRIOR and get emergency medical help. · The most common side effects are pain in the abdomen, change in bowel habits, rash, hair loss (alopecia), and mood swings. Take CUVRIOR at least 1 hour apart from any other oral medicine. Tell your doctor about all the medicines you're taking, including over-the-counter medicines, vitamins, and herbal supplements. Avoid taking supplements when taking CUVRIOR. Taking CUVRIOR with mineral supplements (e.g., iron, zinc, calcium, magnesium) can reduce the effectiveness of CUVRIOR. If iron supplementation is necessary, take CUVRIOR at least 2 hours before or 2 hours after taking iron; for other mineral supplements (e.g., zinc, calcium, magnesium), take CUVRIOR at least 1 hour before or 2 hours after. Do not start or stop any medicines while taking CUVRIOR without talking to your doctor. These are not all the possible side effects of CUVRIOR. You are encouraged to report negative side effects of prescription drugs. Contact Orphalan at 1-800-961-8320 or [email protected] or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch. Please see full Prescribing Information at https://bit.ly/3LV8FRQ *Sponsored by Orphalan* #TheBalancingAct #BehindTheMystery #WilsonDisease #WilsonDiseaseAwareness #RareDisease #Orphalan #RareDiseaseAwareness
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Behind the Mystery reposted this
We have an airdate! Grateful for the opportunity to raise awareness for #Wilsondisease on Behind the Mystery with co-hosts Montel Williams and Olga Villaverde. Thank you to Orphalan for developing a new treatment to help people with this rare #geneticdisease. BrandStar #TheBalancingAct
Tune in to go #BehindTheMystery of Wilson disease, a rare genetic disorder caused by a malfunctioning ATP7B gene that hinders copper elimination. Hear from Mandy, a Wilson disease patient, as she shares her journey and how she found an effective medication and treatment plan. Hepatologist, Dr. Cheung breaks down the complexities of Wilson disease, covering its genetic roots, symptoms, and the crucial need for early diagnosis, proper management, and consistent treatment. Join us in the studio with Rhonda Rowland Wilson disease warrior and VP of Wilson Disease Association, and Dr. Nasseem Amin, CEO of Orphalan, to discuss advancements in Wilson disease treatment. Join us tomorrow at 7:30 AM ET/PT on Lifetime TV.🧬 *Sponsored by Orphalan* #TheBalancingAct #BehindTheMystery #WilsonDisease #WilsonDiseaseAwareness #RareDisease #Orphalan #RareDiseaseAwareness
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Behind the Mystery reposted this
We excited to have another opportunity to raise awareness for the Wilson Disease Association and treatment advances for this rare genetic #liverdisease on Behind the Mystery. Thank you to Orphalan for your commitment to helping improve the lives of those with #Wilsondisease. Rhonda Rowland #raredisease #geneticdisorder
Tune in to go #BehindTheMystery of Wilson disease, a rare genetic disorder caused by a malfunctioning ATP7B gene that hinders copper elimination. Hear from Mandy, a Wilson disease patient, as she shares her journey and how she found an effective medication and treatment plan. Hepatologist, Dr. Cheung breaks down the complexities of Wilson disease, covering its genetic roots, symptoms, and the crucial need for early diagnosis, proper management, and consistent treatment. Join us in the studio with Rhonda Rowland Wilson disease warrior and VP of Wilson Disease Association, and Dr. Nasseem Amin, CEO of Orphalan, to discuss advancements in Wilson disease treatment. Join us tomorrow at 7:30 AM ET/PT on Lifetime TV.🧬 *Sponsored by Orphalan* #TheBalancingAct #BehindTheMystery #WilsonDisease #WilsonDiseaseAwareness #RareDisease #Orphalan #RareDiseaseAwareness
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Mandy was diagnosed with Wilson disease at a young age and shares her personal journey with the condition. She reflects on how her brother, who also has Wilson disease, supported her as they both navigated childhood with a rare disease. Her experience highlights the challenges faced by patients in managing their treatment regimens and the need for more convenient options. Watch the full story with the Wilson Disease Association on TheBalancingAct.com/rare *Sponsored by Orphalan* #TheBalancingAct #BehindTheMystery #WilsonDisease #WilsonDiseaseAwareness #RareDisease #Orphalan #RareDiseaseAwareness
Mandy was diagnosed with Wilson disease at a young age and shares her personal journey with the condition
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This special episode of Behind the Mystery features insightful discussions with a dedicated physician, an advocacy leader, and a CEO whose company has pioneered the first FDA-approved treatment for Wilson Disease in nearly 30 years. Visit TheBalancingAct.com/rare to watch or visit TheBalancingAct.com/press to learn more. #BehindTheMystery #TheBalancingAct #WilsonDisease #WilsonDiseaseAwareness #RareDisease #Orphalan #RareDiseaseAwareness
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Have you heard of Wilson Disease? It's a rare genetic disorder caused by a malfunctioning ATP7B gene that affects copper elimination. Get the full story tomorrow, August 19th at 7:30 AM ET/PT on Lifetime Television or visit TheBalancingAct.com/rare to learn more. #BehindTheMystery #WilsonDisease #RareDisease
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Tune in to go #BehindTheMystery of Wilson disease, a rare genetic disorder caused by a malfunctioning ATP7B gene that hinders copper elimination. Hear from Mandy, a Wilson disease patient, as she shares her journey and how she found an effective medication and treatment plan. Hepatologist, Dr. Cheung breaks down the complexities of Wilson disease, covering its genetic roots, symptoms, and the crucial need for early diagnosis, proper management, and consistent treatment. Join us in the studio with Rhonda Rowland Wilson disease warrior and VP of Wilson Disease Association, and Dr. Nasseem Amin, CEO of Orphalan, to discuss advancements in Wilson disease treatment. Join us tomorrow at 7:30 AM ET/PT on Lifetime TV.🧬 *Sponsored by Orphalan* #TheBalancingAct #BehindTheMystery #WilsonDisease #WilsonDiseaseAwareness #RareDisease #Orphalan #RareDiseaseAwareness
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Behind the Mystery reposted this
Senior Producer/ Creator at Behind the Mystery, Senior Associate Producer, Rare and Genetic Diseases Expert, Producer of Designing Spaces, Military Makeover with Montel Williams, Inside the Blueprint, The Balancing Act
APDS is a genetic immunologic condition that can have a severe impact on a patient’s life. It was first described in literature in 2013, and before then, nothing was known about it or that it even existed. Patients with APDS present with a wide variety of illnesses, and even family members can have different manifestations of the condition. Symptoms include susceptibility to certain infections, enlarged lymph nodes, liver and spleen, certain lymphomas, GI conditions, and developmental delay. If you suspect you have APDS, a genetic test can confirm your diagnosis. As a child, Tyler was constantly in and out of the hospitals with symptoms doctor’s couldn’t figure out. When he was finally diagnosed with APDS at 13 years old, to his and his family’s surprise, so was his sister. Watch Tyler’s inspiring journey and how his sister, Kaitlyn dealt with the shock about her own APDS diagnosis. Visit: https://lnkd.in/tKYuVQ Behind the Mystery Immune Deficiency Foundation Jeffrey Modell Foundation #immunedeficiency #raredisease #geneticdisease
Behind the Mystery of APDS: A Rare Primary Immunodeficiency
https://www.youtube.com/