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ABOUT PORPHYRIA
IT'S
ALL
In
Your
HEAD
A Documentary by MYTH Entertainment
It’s All in Your Head is a powerful and deeply human documentary that sheds light on Porphyria, a rare, often misunderstood genetic disease that has silently affected families for generations.
The documentary was born through the personal journey of Michael Pera, a Porphyria survivor whose diagnosis became the key to unlocking a painful family history. As Michael sought answers to his own condition, he discovered that Porphyria was hereditary and that both his mother and grandmother had suffered for years without ever knowing the cause. Misdiagnosed, dismissed, and misunderstood, they endured their illness at a time when awareness and medical knowledge of Porphyria were limited or nonexistent.
This revelation inspired the novel It’s All in Your Head, written by Hugo Stefano and Michael Pera, which tells the story of Michael Pera’s family across generations. The book captures not only the physical toll of the disease, but also the emotional and psychological burden of being told that the pain was imagined when it was anything but.
When MYTH Entertainment decided to bring this story to the screen, the goal was clear: this documentary would not focus on a single voice or a single experience. Porphyria is not isolated, and neither are those who live with it.
In collaboration with Ms. Desiree Lyon, Founder of the American Porphyria Foundation, MYTH Entertainment uncovered the true scope of the disease revealing that thousands of individuals around the world are living with Porphyria. Many continue to face delayed diagnoses, complex symptoms, and profound challenges navigating the medical system.
As a result, It’s All in Your Head features a diverse group of participants from multiple states across the United States, including:
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Patients living with severe and rare forms of Porphyria
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Individuals whose lives were permanently altered before receiving a diagnosis
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Medical specialists dedicated to understanding and treating this complex disease
Through these voices, the documentary exposes the realities of Porphyria while honoring the resilience of those who live with it every day. It is a story of suffering, survival, and, ultimately, awareness.
It’s All in Your Head is more than a documentary. It is a call to listen to patients, to families, and to stories that for too long have been ignored.
Want to learn more about Porphyria?
Visit the American Porphyria Foundation, founded by Ms. Desiree Lyon, for comprehensive information, resources, and support for patients and families affected by Porphyria.
This film stands as a testament to truth, science, and the voices that refuse to be silenced.
DESIREE LYON - BIOGRAPHY
Desiree’s activities for the past thirty years have centered on patient education, patient advocacy efforts and as an award winning authored. In these capacities, Desiree has written major health related books and articles, lectured on a variety of health related subjects, including porphyria, genetic diseases , prostate cancer, patient support and education programs, the unique difficulties of rare and genetic diseases and physician education. She founded and is presently directing an international health foundation.
After ten years of misdiagnosis, Desiree was finally diagnosed with AIP at death's door. She was air lifted to NIH where she began hemin infusions, then a life saving experimental treatment . She later would win the FDA HERO AWARD for facilitating Panhematin/hemin as the first orphan drug.
Desiree and James Young founded the AMERICAN PORPHYRIA FOUNDATION (APF) in 1982. Desiree became the Executive Director of the APF and served in that capacity for 40 years growing the APF from two members to almost 20,000 in 120 countries. Her work has yielded her many awards , including the NORD Rare Impact award and the International Porphyria Congress and GPAC Lifetime Achievement Award . She was also a founding member of Global Porphyria Advocacy Coalition, a major force worldwide for the porphyrias.
Desiree has been an author for 20 years. Her book, His Prostate and Me: A Couple Deals with Prostate Cancer, is considered one of the leading books for couples facing this disease. Because of its significance in the field of prostate cancer, His Prostate and Me was reviewed in the science section of New York Times and was touted by experts and celebrities like, FDA Commissioner, Dr. Andrew von Eschenbach, golfer, Arnold Palmer, theologian, Bishop Desmond Tutu and other notables in the field of prostate cancer. Desiree has also written many articles for health magazine, like Coping, a renowned journal for cancer survivors.
Porphyria A Lyon’s Share of Trouble, her next book, was featured in the New York Times. The book deals with the unique emotional and physical struggles of a patient with a significantly painful genetic disorder. Her other writings are vignettes published in eight notable books and numerous magazines on subjects primarily centering on dealing with chronic illness.
She and her deceased husband, Dr. Richard Howe, who was the former President of Pennzoil Corporation, have lectured on Life After Prostate Cancer to audiences of 30,000 at major hospitals and conferences around the globe, including the International Congress of Psychiatrists in Venice, Italy. Desiree has also been the guest on an extensive number of radio and television talk shows, speaking on a variety of health subjects.
She is the Founde, former Executive Director and Trustee of the American Porphyria Foundation (APF), an international educational agency for the porphyrias, a group of rare, genetic diseases. The APF, which now hosts a membership of 20,000 patients, maintains a very comprehensive educational program for patients and physicians, an outstanding website, quarterly newsletter, nine patient support networks, including a Porphyria Partners program, seven social networking groups for each type of porphyria and a Global Partners program , a podcast called, Rarely Discussed and a thriving Enews. The Global Partners program assists patients around the world to create their own foundations in their own countries. The APF provides the organizational prototype, educational materials, resources and often translations and administrative assistance to facilitate the new foundation growth. The APF continues to serve in an advisory capacity.
Another highly successful project Desiree heads is the APF media project, which has secured more porphyria features on television series and medical programs than any other rare disease, namely Medical Mysteries, House, Scrubs, Anderson Cooper, Grey’s Anatomy, National Geographic, Dr. Sanjay Gupta, Mystery Diagnosis, Doc Martin, CSI, CNN, Telemundo, ABC and Fox News, Greys Anatomy,and Emergency Room to name a few. Desiree provided porphyria information and documentation for the movies, the Madness of King George and The King’s Speech. Moreover, Desiree helped developed the award-winning APF website, www.porphyriafoundation.com and Porphyria Live Video.
She created the following and assists with the administration of the following educational and awareness programs:
APF membership with 20.000 members from 120 countries
APF Website with 110 000 new visitors in 190 countries
Enews with 17,000 readers
Social media, which has over 10,000 members.
Podcast and Reels with 40,000 viewers
Newsletter with 10,000 readers
In addition, the she initiated and directed the APF Protect the Future training program to train the next generation of porphyria experts. The young future experts are trained by members of the Porphyria Research Consortium. The program has been so successful that it has become a model for many other health care organizations.
Desiree has also won awards for her involvement in research and FDA drug approval. In fact, she won the FDA Hero Award for facilitating Panhematin as the first Orphan Drug and NORD Impact Award for her pioneer work in Orphan Diseases. She won the Global Porphyria Advocacy Coalition Lifetime Achievement Award for her work in the global porphyria community. She also helped gain FDA approval for the treatments, Scenesse for EPP, Givlaari for acute porphyrias, Panhematin for acute porphyrias, and is now assisting to secure Bitopertin FDA approval for EPP treatment. She was a major force in the creation of the Porphyria Research Consortium of experts and Porphyria Centers of Excellence nationwide.
Desiree served on the boards of M. D. Anderson Cancer Center and The University of Texas Medical Branch, National Organization of Rare Disorders (NORD), the National Prostate Cancer Coalition, Alliance of Genetic Support Groups and Council of Regional Genetics, as well as many other church and civic organizations. In addition, she has been active in the adoption of important national health legislation and promotion of both porphyria and prostate cancer in the national media.
Desiree is the owner of Howewrite, Inc., a publishing company focusing on health-related publications and former owner of Wealdstone Corporation, a land development company. She is the former partner in River Oaks Bank in Houston, Texas and Ruska Instrument, Company in Houston, Texas, a precision instrument manufacturing company.
Desiree received her high school education in Europe at Frankfurt American High School and earned her BS from Auburn University and Honorary Ph.D. from Whitney University.
She is blessed to be the mother of her daughter, Lelia Polly, grandmother to Elizabeth Grace Brougher and William Stafford Brougher, and widow of Dr. Richard Howe.
My story has many misdiagnoses, 100 hospitalizations, paralysis, 30 times intensive care,
Medical evac at deaths door to nih. Dr recognized the dark urine and called porphyria. He was correct. Given experimental treatment that saved my life…I was given later the fda hero award for helping that same treatment become the first orphan drug. Panhematin.
Founded APF with James young. Forty years later almost 20,000 members in 120 countries. Huge patient and do to red program.
It ends with James young and I creating the Amer porph foundation. Then I was one of the pioneers of the Orphan Drug Act, the FDA hero for facilitating Panhematin as the first ORPHAN DRUG, winning the nord Rare Impact Awzrd, then the LIFETIME ACHIEVEMENT AWARD at International Porphyria Congress in Spain, and honorary International porphyria expert network award.
For 44 years Desiree has served the. Porphyria community, assisting research, bringing on new treatments , facilitating innovative means to educate doctors and patients on the porphyria’s and creating countless means to provide support worldwide.
DR ROY SMITH - BIOGRAPHY
Roy E. Smith, MD, is a professor of medicine at the University of Pittsburgh School of Medicine in the Division of Classical Hematology. Dr Smith specializes in bleeding and thrombotic disorders, Rare Homologic Diseases, Chronic Leukemia and Myelodysplasia.
Dr. Smith is board-certified in internal medicine, medical oncology, and hematology. He received his medical degree from The Ohio State University, Columbus, and his Master of Science degree from the University of Wisconsin, College of Medicine, Madison.
He completed his residency in Internal Medicine and his fellowship in hematology and medical oncology at The Ohio State University. He is the former director of the Ohio State University Hospital's Special Coagulation Laboratory and its Hemophilia Center. While at the Ohio State University. Dr Smith also served as that Head and Neck Medical Oncologist developing innovative therapies for head and neck cancer.
Dr. Smith served as the medical director of the National Surgical Adjuvant Breast Project and participated in international trial with collaborators from Canada and Germany.
He has served as a member and chairman of the Central Investigational Review Board for the Cancer Therapeutics and Development branch of the National Cancer Institute and has served on the Peripheral and Central Nervous System Drug Advisory Committee and the Oncologic Drug Advisory Committee of the FDA.
Dr Smith is renown worldwide as a porphyria expert and researcher. He serves on the APF Scientific Advisory Board, consulting with doctors globally, participating in APF Zooms, Patient Meetings and advising on porphyria projects. His expertise is not only recognized by his peers in the porphyria field, he is noted as one of the most beloved clinicians by patients and their families because of his great compassion for his patients.
He served as chairman of the board of Pulmonary Embolus Response Team Consortium and presently serves as a member its governess committee.
Dr. Smith serves as the co-chair of the Anticoagulation Task Force for the Presbyterian Hospital and its affiliates and co-chair of the Anticoagulation Working Group of the system-wide P and T committee.
Dr. Smith is a member of the American Society of Hematology, the American Society of Clinical Oncology, the Society for Scientific Exploration, The International Society of Thrombosis and Hemostasis, the American Medical Association and the American Society for Apheresis, and the American College of Chest Physicians. He is a Fellow of the American College of Physicians and the International Academy of Clinical and Applied Thrombosis and Hemostasis.
Dr Smith has an international reputation as an expert in the treatment of patients with porphyria and other rare disorders.