Much of the life of Desiree Lyons has been spent in hospitals. Lyons, who is a long-time sufferer of porphyria, says that when left untreated the disease can become a nightmarish rollercoaster ride offering only temporary relief from suffering before an eventual debilitating attack occurs. The accumulated effect of Lyons’s battle with her disease is more than 100 acute attacks, 30 extended stays in intensive care units, and the suffering of total paralysis twice.
Lyon’s despair is obvious when she reflects upon the fact that porphyria is a disease in which a sufferer can feel totally fine at one moment and then a week later can be on their death bed.
This was life as Lyons knew it until Jeff Aronin entered the scene. The two recognized immediately that they were kindred spirits and Lyons welcomed the addition of Aronin’s expertise being added to her own situation as well as the endeavors she had undertaken to provide aid to all sufferers of porphyria.
Lyons became the co-founder of the American Porphyria Foundation in 1982. The APF, which was started at her own kitchen table worked to assure that no sufferers of the horrid disease went undiagnosed and were given the treatment they needed. Through a partnership with Aronin and his Ovation Pharmaceuticals, the APF was set firmly on a path to achieve these goals.
APF had been able to assure that its 8,500 members with Panhematin, an injectable drug that gave a new lease on life for sufferers of porphyria. But when its supplier lost its ability to manufacture the drug due to restrictions by the Food and Drug Administration the availability of the drug quickly dwindled. At one point, only 100 vials of the drug remained in existence.
Jeff Aronin and Ovation stepped in and were willing to do all that was necessary to assure APF members once again were given the treatment needed to preserve a decent quality of life. Aronin and ovation accepted the responsibilities of not only developing the drug but also providing education about the drug to both patients and doctors.
Jeff Aronin would eventually sell Ovation and is no longer in charge of Panhematin but the drug is now no longer in danger and readily available to all that need it because of his efforts.