Today is Rare Disease Day USA
Today is Rare Disease Day USA. It’s aimed at bringing attention to people suffering with rare illnesses for which there are few treatment options.
Bayville mom Kimberly Barna, who suffers from a rare immune deficiency disease, brought the day to our attention and is hoping to raise awareness about rare diseases.
“I want research to be done,” Barna said. “Not just for me. Even if no one ever looks at Compliment Deficiency. Do it for these other people. I want to see a walk so the funds can go to the Immune Deficiency Foundation,” Barna explained.
She also encourages doctors to look a little deeper when patients are not improving from conventional treatment. “Those are the people that you should say ‘hmmwobm?’ as a doctor. ‘Why don’t we do these test and just rule this out?’ because you know what? It’s out there,” she said.
Barna is also hoping to open up the dialogue about rare diseases because she said it’s difficult for her to talk about her struggles with others. “I really haven’t shared a lot with my friends on this topic because people are funny about things that they don’t know. You kind of fear the things you don’t know or don’t understand,” explained Barna.
Barna opened up about having to avoid going to PTA meetings and other public gatherings to prevent contraction of common illnesses. She also explained the strain it’s placed on her husband who has to take days off from work to tend to their four children during her frequent hospitalizations and the financial toll it’s taken on the family budget.
She said the path to getting information about her rare disease and finding the few physicians skilled enough to treat her, was forged on her own. She has even found a web site rarediseaseday.us for support and information.
Barna is seeking an organization that’s willing to develop a fundraising event. Any group willing to step up can contact WOBM News in the comment portion of this story or call us at 848-221-8100.