Melissa Nagin

Type of Porphyria

Acute Intermittent Porphyria (AIP)

Melissa "Missy" Nagin was a healthy young woman. However, when she went to college, she began drinking alcohol and taking birth control all of which contributed to the beginning of strange symptoms.

No one could diagnose her pain, skin symptoms and general misery. This went on for a long time until she saw a dermatologist, who's first practice was hematology- Dr. Lydia Evans made the overall diagnosis of porphyria and knew what tests to send to confirm this diagnosis. Dr. Evens recommended that Missy see Dr. David Bickers and Dr. Maureen Po who are Porphyria experts. They made the official diagnosis of Variegate Porphyria.

She graduated from nursing school and moved to St. Louis to start her career as a bone marrow transplant nurse. It was here that she had her first acute porphyria attack. Despite having a confirmed diagnosis of Varigate Porphyra and ER guidelines from the porphyria foundation, her care was mismanaged in the hospital and her porphyria was not treated until about 10 days into her stay. The porphyria symptoms continued to get worse as she was not being treated- finally panhematin was ordered and slowly her symptoms started to go away.

The diagnosis did not stop the attacks. She also made another life changing decision to move to Seattle, Washington. Fred Hutchinson Cancer Research Center had a Porphyria expert working there and Missy needed to be somewhere where they knew what to do when she got sick.

After the big move across the country a good friend from nursing school invited her to SANCA, The School of Acrobatics and New Circus Arts. Having never visited a Circus School, she went with the friend and was immediately hooked. She began learning the flying trapeze!!! When she was well and not working, she joined classes and practiced trapeze as well as other circus disciplines- She loved getting to move her body and gain strength at the same time . When she was ill, she strived to get well so she could have fun on the trapeze. It became her life outside of work. She now teaches and performs at SANCA/Emerald City Trapeze Arts and her porphyria expert understands and adjusts her treatments when needed to help maintain her work/life balance.

Missy vowed to not let porphyria rule her life and sees herself as uniquely special. Her friends describe her as full of life, caring and having a kid-like energy that is frequently contagious. She has a passion for world travel and wants to go everywhere and see everything. Recently, she returned from a trip to India for two weeks. She has traveled around the world, including summiting Mt. Kilimanjaro and volunteering in Cambodia- taking care to follow all the porphyria rules about rest, diet, no alcohol and no unsafe drugs. She is also fortunate to have a porphyria expert adjust her meds because she continues to have attacks. At present, she is taking Givlaari and Panhematin to stop the attacks. Interestingly, her prodrome is a haze in the left eye that frequently progresses to a complete black out. When that happens, she knows an attack is coming and heads to the ER to have the Panhematin infusion to stop the attacks fast. Her expert has a treatment plan in place at the ER, which even includes that she knows the attack is coming when her left eye gets hazy. The ER sometimes pays attention and administers the Panhematin, but frequently requires either Missy or a friend to advocate for her. Stopping the attack fast is key to getting well fast and keeping nerve damage at bay. Her decision to move near a porphyria center was a good one. Melissa will be a guest on our upcoming APF podcast, Rarely Discussed. Watch the many podcast porphyria guests on You Tube https://www.youtube.com/watch?v=6BVYRLZMOgI