Chambersburg man, 27, battles rare blood disease, ITP
Jon Acre, photographed Friday, has Immune Thrombocytopenia (ITP), a rare blood disorder in which his body’s immune system attacks his platelets, creating a risk of serious bleeding. (Markell DeLoatch — Public Opinion)
(Chambersburg) — Imagine parents being told that their child cannot play on the playground with other kids, ride a bike, participate in normal childhood activities or contact sports because a bump, cut, or impact to the child’s head could lead to life-threatening bleeding. Now imagine trying to get emergency help for your bleeding child and being accused of abuse because your child is covered with bruises.
As an adult, imagine waking up in the morning with a mouth full of blood blisters, heading off to work with a nosebleed that won’t stop for hours, or going to bed at night with a headache and fearing you’re having a brain hemorrhage and won’t wake up in the morning. This is life for people with the bleeding disorder Immune Thrombocytopenia (ITP).
ITP is a rare autoimmune disease where the blood has fewer platelets than normal. This leads to the body’s immune system attacking the platelets as if they are foreign cells, creating a higher risk of bleeding. While many people don’t know about this disease and there isn’t much research being done, one local woman is looking to change all that.
Kimberly McBeth’s son Jon Acre, 27, looks like a normal young man, but that’s what can happen with ITP victims. They can look normal on the outside, but on the inside, they are fighting a constant battle with themselves. “It’s like a civil war in your body,” Acre said.
Acre was diagnosed with ITP around the age of seven or eight. He had black and blue marks all over his body and his elementary school principal contacted McBeth to ask if Acre had been the victim of abuse at home. McBeth said she was ready to ask the principal if someone had been bullying Acre at school. Neither one was the case, so McBeth took Acre to the family doctor and blood was taken and analyzed. There were a few possible explanations, including leukemia. It wasn’t long before the doctor was on the phone with McBeth explaining that Acre’s blood platelet count was down to 3,000 and he needed to be taken to Hershey immediately. A normal person’s blood platelet count is between 150,000 and 450,000 platelets. With Acre’s count being a fraction of what it should have been, he received the treatment he needed at Hershey.
What followed was three to four years of more treatments and a lot of praying. One of the treatments included the cauterization of Acre’s nose, which is when a hot piece of metal is inserted in a person’s nasal passage to burn the blood vessels shut. During this time, Acre found himself limited in what he could and couldn’t do. “I wanted to do all the things kids did,” Acre said.
As Acre was preparing for his last checkup and examination to determine where he was in the recovery stage, “the whole church and community were praying for him,” McBeth said. The diagnosis came back that Acre was relieved of his ITP. It was believed that if Acre beat ITP as a child, then he wouldn’t have to deal with it as an adult. That seemed to be the case for a few years, until about four years ago when Acre decided to go have a blood test just to see what might be wrong with him. He was bruising easily and had small red dots on his arms. The results weren’t good.
“I pretty much ran through every treatment possible,” Acre said of curing his ITP. “You name it, we’ve tried it,” McBeth said. Some of the biggest issues with ITP is that there is no known cause of ITP, nor are there any truly effective cures for it. The treatment that Acre undergoes is “just a Band-Aid” according to both Acre and McBeth. He has a blood test every Monday and when necessary, undergoes a process called intravenous immune globulin (IVIG) where platelets are injected into his bloodstream and boost his numbers to the lower end of the normal range. The blood test results from Monday are quickly analyzed and if IVIG is needed, Acre spends the next three days enduring three and a half hours’ worth of injections per day. However, this treatment’s results are not very long-lasting so Acre returns for IVIG every six to eight weeks.
These days, there is only so much that Acre can do with his condition. “I don’t want to be limited, but I have to be limited. The littlest thing can make me bleed out,” Acre said.
September is National ITP Awareness Month and McBeth plans to have some kind of event, much like a Relay For Life event for cancer, to help raise awareness of ITP in September of 2016. She doesn’t know exactly what kind of event it will be, but she does know that with so little information known about ITP, she wants to get the message out and be there for the people who are suffering through this disease or know someone who is suffering. McBeth says that if anyone in the area wishes to contact her about this disease, they can do so by phone at 717-658-3017 or by email at Kimmermcbeth@gmail.com.
“I want people to know they are not alone. I want them to have help. Just because you can’t see it in their face, doesn’t mean they aren’t hurting on the inside,” McBeth said.
Jon Acre, 27, of Chambersburg, talks Friday about the treatment he needs and the limitations on his life as a result of having Immune Thrombocytopenia (ITP), a rare blood disorder. (Markell DeLoatch — Public Opinion)
This article comes to us through a partnership between Public Opinion Online and WITF.
A collection of interviews, photos, and music videos, featuring local musicians who have stopped by the WITF performance studio to share a little discussion and sound. Produced by WITF’s Joe Ulrich.
