One Man’s Journey
Jerry discusses what it was like to be treated for hemophilia in the 1960s in Nevada and how much treatment options have improved for those with inherited bleeding disorders.
When Jerry was diagnosed with Hemophilia in 1967, he had to travel to Palo Alto, California where medical experts were capable of making that determination. Once diagnosed, he could get treatment in Las Vegas. He is the only person in his entire family with Hemophilia.
When he was five years old, treating a bleed required a trip to the hospital. His mother had to call ahead to the hospital and let them know they had to start thawing out the Cryo, (Cryoprecipitate) used to treat his bleed.
A couple years later, Jerry’s mother learned how to infuse Jerry herself at home.
“This still took time, not six hours like with Cryo, but at least an hour. It had to be mixed very slowly and was infused using a drip bag that we hung from our chandelier over the dining room table.”
Jerry had to lay on a foam bed on the dining room table in order to be infused with this home treatment. As the years went on, the medicine (also called factor) improved immensely and now Jerry can mix and infuse on his own, “and be done in five minutes.”
Growing up, Jerry wasn’t allowed to ride a bike until he was eight years old, wasn’t allowed to participate in any sports except swimming and often had to sit out for P.E. class in school. He also wasn’t allowed to take shop class or work with tools because his family feared he would receive an injury. Many of these things made him feel “like the odd man out.” The only activity he was allowed to be in was music class.
“I was allowed to be in band, marching band, as well as jazz band.”
“I lost three jobs due to my Hemophilia. I was on a group plan and when the rates went up and they looked at the reasons why, it was discovered that I alone was responsible for a million dollars of claims a year, so they came up with a bogus reason and they let me go.”
Much more is known about Hemophilia today than when Jerry was diagnosed. At the age of eight, Jerry had to undergo his first surgery, a synovectomy, which is the removal of the synovial membrane of a joint in his knee, and had to travel from Las Vegas to Los Angeles to have the surgery done. When he was older, he also had to have an ankle fusion, both his elbow joints replaced, and his knee joint replaced. Jerry believes that “the medication today and treatment plans given to the new generation of young Hemophilia kids means they will not likely ever have to have any of this. As long as they follow their treatment plan, joint replacements and joint fusions could be a thing of the past for these kids.”
Even with these challenges in his life, Jerry remains positive and educates people along the way about Hemophilia. “I’ve never been shy about letting people know about my Hemophilia. Most don’t know anything or very little about Hemophilia, so I was always educating as I went along.” He wants people to know that, “We are not contagious. We don’t die if we get cut. We are very aware of our condition and act accordingly so you don’t have to walk around us with kid gloves on.”
The Nevada Chapter of the National Hemophilia Foundation offers a number of support groups, including groups for families of newly diagnosed children. For additional information on support groups or any other services and benefits provided by NHF Nevada, please call (702) 564-4368 or email Anne at firstname.lastname@example.org
The process is easy. Simply fill out the online vehicle donation form on the national website or call 1-855-NHF-4-CAR. Your vehicle (running or not), is picked up free of charge, sold for you, and a portion of the proceeds come directly to the Nevada Chapter of the National Hemophilia Foundation (NHF-NV).
This unique giving opportunity not only helps you clean out your garage but also supports our mission to fund vital research and provide key educational programs and public policy initiatives for people with bleeding disorders.
Help to support comprehensive hemophilia care in the state of Nevada.
Assist with ensuring emergency factor availability in hospitals statewide
Sponsorship of educational programs for consumers and healthcare providers
Sponsor youth ages 7-17 to Hemophilia Summer Camp
Distribution of educational materials Publish informational newsletter
Assist clients with insurance denials and reimbursement problems
Host Consumer Social Events such as picnics and Holiday Parties
Telephone peer support network and youth group
• Improve consumer and healthcare provider education about inherited bleeding disorders
• Promote and support comprehensive hemophilia care in Nevada
• Raise the awareness of bleeding disorders
• Serve as a resource center for distributing educational and informational materials
• Diminish geographic and insurance/reimbursement barriers to receiving adequate care
“To improve the quality of care and life for people with hemophilia, von Willebrand disease and other inherited bleeding disorders, through education, peer support and advocacy.”