Joan Young '77G
“I have what?” Joan Young, a ’77 MBA graduate, wasn’t sure if she heard the doctor correctly.
The blood specialist carefully wrote the name of the rare disease, Immune Thrombocytopenic Purpura or ITP, so that Young could remember.
Within a year, Young became a leading advocate for better education, treatment and research of this rare blood disorder.
Young’s doctor explained that ITP is an autoimmune disease where the body attacks its own platelets, disabling the body’s ability to clot. Without enough platelets, any blow to the head or deep cut could kill Young.
“My body was betraying me,” Young realized.
Then the doctor gave Young worse news. No one knows what causes ITP, and it has no cure.
Young first noticed something was wrong in 1992 after her Fourth of July weekend in Quebec City, Canada. The holiday had been particularly dark and damp, and the successful employee at Johnson and Johnson returned home with a bad flu. But weeks later the aches and chills persisted, despite Young’s usual flu treatment of “lying on the sofa and watching four rented videos,” Young said.
Then Young noticed mysterious bruises on her arms. She realized that the strange ailments were not going away, and she visited her doctor who then referred her to a blood specialist.
The doctor prescribed a heavy dose of steroids, and blood tests showed a slight raise in Young’s platelets, but the improvement exacted a heavy cost. The drugs caused Young to gain weight, increased her blood pressure and soured her mood, and she became very angry. The drugs also caused Young to have difficulty thinking, and she felt as if her brain was replaced with “cotton between the ears,” she said.
Young’s side effects were so severe, the doctor decided to slowly reduce her steroid dose until she could stop taking it.
“It wasn’t helping my ITP or at least not very much,” Young said, “and I could tell it was destroying me.”
As she was coming off the steroid, Young had a seizure, which was soon followed by an abnormally high pulse rate. The next few weeks, Young slowly recovered and regained her strength.
The doctors began a series of treatments that other ITP patients found helpful. They removed her spleen, an organ in the immune system, and gave her other powerful medication, including some chemotherapy drugs. But the blood tests only show temporary increases in Young’s platelets. Afterwards each rise, her platelets fell, sometimes dipping to dangerously low levels.
Experimenting with alternative therapies
During these treatments, Young sought other ways to control her body, leading her to explore alternative therapies. First she had herself tested for food allergies and discovered that she was allergic to many of the foods she loved including sugar, dairy and tomatoes. No more pizza and cheesecake, Young decided. The new diet helped stabilize her platelet counts, which remained low but did not fluctuate as drastically.
Then, Young’s psychologist gave her a book about a woman who found relief from cancer by eating a macrobiotic diet, a whole-foods, non-dairy, mostly vegetarian eating plan. “I was intrigued by this diet,” Young said. “I thought that if it could cure somebody with cancer, it certainly could help someone who was ill but not that ill.” And so, Young refined her diet even further.
Young began experimenting with other alternative therapies like Reiki, a Japanese system of energy healing, and Ayurveda, traditional Indian medicine that uses diet, energy and herbs.
“All the things I tried,” Young said, “seemed to improve my platelet count and my general health.”
By the summer of 1993, only a year after her symptoms began, Young had a normal, healthy platelet count, but for the first few years whenever Young strayed from her wellness regime, her platelet numbers decreased again.
When Young first began taking alternative medicine, her hematologist, a physician specializing in blood disease, simply wrote down the information. “He didn’t think these things would help, but what he was doing wasn’t helping either or not very much,” Young said.
As Young’s health improved, the hematologist suggested that she might have been misdiagnosed or that the disease spontaneously subsided. “It sure didn’t seem spontaneous by my definition of the word,” Young said.
Young thought she had found a cure and eagerly shared her experience with leading ITP researchers. “They were polite,” she said, “but they didn’t share my enthusiasm.”
PDSA is born
But Young was convinced that other people with ITP and related diseases could benefit from her experience. Using her computer training from Lehigh, she created a Web site where she told her story, provided information about ITP and created a space for others to share their stories.
“I was shocked at how many people came to the Web site,” Young said. So, she was receiving emails and phone calls from people all over the world. “It became a phenomenon,” she said.
Young realized that her humble Web site was actually a non-profit organization in the making, and the Platelet Disorder Support Association (PDSA) was born.
The PDSA offers hope to many patients with ITP or other platelet disorders. They can read pages of information on treatments and research, speak to knowledgeable physicians and contact other people with similar disorders. The organization has also prompted pharmaceutical companies to seek better treatments by providing them with easy access to patients.
The PDSA not only contains articles discussing alternative therapies but also provides in depth information on standard treatment, new research and healthy living.
“We try to provide as far-reaching and comprehensive information as we can,” Young said.
Under Young’s guidance, PDSA has begun to expand into other platelet disorders and cross international boundaries. Already, 23,000 people from 130 countries depend on PDSA for information about their platelet disorders.
In June, the PDSA hosted its annual conference in the Meadowlands, New Jersey. During the conferences, over 200 attendees could listen to lectures presented by experts in platelet disorders and learn from the experiences of other patients.
For more information visit www.pdsa.org
or call 1-87-platelet.