Franklin County mom reaches out to people with blood disorder
Word is just getting out, and already Kim McBeth, Chambersburg, has been contacted by numerous people about their own children or family members affected by Immune Thrombocytopenic Purpura (ITP). She bets they were like her son, Jonathan Acre, thinking they were alone in their journey with a blood disorder.
McBeth is focused on supporting September, National ITP Awareness Month. She and her only child have been dealing with the symptoms and treatments of ITP since Acre was eight. He is now 27.
Acre was diagnosed as a child, and went through treatment at Hershey Medical Center, with weekly blood tests at Waynesboro Hospital. After three years, the condition disappeared.
“The doctors know so little about it,” McBeth noted. “They said he would never get it back. Sometimes the condition corrects itself, but people have no idea why.”
With ITP, the body does not have the normal blood platelet count of 150,000 to 400,000. Therefore, a slight injury, such as a tight hug, could cause a sufferer to bleed to death, McBeth said. For Acre, his relief ended when he was about 22, and ITP returned.
Because he is at such risk of a health crisis, it is difficult for him to find work and have an active social life. The mother and son battle on.
The medical community knows of no definitive cause of the disease, and say it is not genetic.
“I have a problem with that,” said McBeth. “His uncle had it.”
She does not know of any lab researching the cause and cure of ITP.
Acre works with a hematologist, and his platelet level is checked regularly. Every four to six weeks the count is low enough that he needs three days of intravenous gamma globulin (IVGG) treatment. The blood products used for that come from 3,000 blood donors.
“I am so grateful for people who do that,” McBeth said. “They keep my son alive.”
Acre calls the IVGG “human glue” because it keeps him together.
The condition causes him to hurt all over, but he tries to keep a good attitude.
McBeth has reached out to people to conduct an outreach event in September 2016, and the response has been more than she expected. She is working on obtaining 501(c)(3) status for a non-profit organization.
“I already have a board of directors,” she said. “It is falling together. It’s blowing me away.”
Volunteers have come forward to help create an event in Scotland next year.
“I’m stepping into the water before I know there’s a raft out there,” McBeth said.
But she is adamant. “I am determined Jon is not alone. ITP is not going to get him.”
Anyone interested in the support group, or to help spread awareness, may contact McBeth at 717-658-3017, through her Facebook page, or at kimmermcbeth@gmail.com
ITP facts
According to Johns Hopkins Medicine, ITP is an abnormal decrease in the number of platelets, the cells that help stop bleeding. It is an immune reaction to one’s own platelets.
The condition affects children and adults, and is more prevalent in females.
The causes can be: medication allergies, infections, pregnancy, immune disorders, lymphomas and leukemias, or no known reason.
Symptoms include: bruising, red dots under the skin, nosebleeds, bleeding in the mouth or head, blood in bodily fluids, or heavy menses. Treatment is usually steroids or IVGG.