![]() ![]() Rohini: My daughter Juhi just turned 19 last week. Jennifer: Our daughter Abigail is now 20. That gave us a built-in support system in the hospital in the very beginning. Shari Solis: The really cool thing about Shae’s story is that the reason that she was diagnosed was because another little girl was diagnosed in the same hospital 12 hours earlier. But they need to learn these things because they're going to meet somebody, maybe, one day and they need to be able to diagnose this. They were all waiting to come into our tiny room. We laugh about it-when Quinn was in the hospital, every morning we would open our blinds and there was Grey's Anatomy outside of our door. Each time one gets diagnosed, a doctor learns something. Do you think it could be what Quinn has?” I was like, “That would be crazy but yes.” He was diagnosed quickly because Quinn was diagnosed. The parents called and said, “These are the symptoms Luke is having. I think that’s what delays diagnosis.ĭanielle: A young man who goes to school with my daughter-it's a crazy story, actually dated. “It's growing pains, of course their knees are going to hurt.” “Oh it’s a cold, she’s got allergies.” Those kinds of things. House said a lot was, “When you hear hooves, you don’t assume a zebra.” That’s exactly how we were all treated. I think at least on three episodes they brought up Wegener’s. After diagnosis, I watched every episode. Rohini: I don’t know if you ever watched that TV show House. They medevaced him out to a larger facility. At that point, they couldn’t deal with it where we lived. He was hemorrhaging out in his lungs, his kidneys were failing, his sinuses were a mess. By the time that he was diagnosed, he was in the hospital. (Courtesy of Jennifer Hoggan.)īeck: I imagine when it’s something that rare, a lot of doctors have probably not seen it before.Ĭamille Mark: Kai presented a lot differently-he had severe nosebleeds for about a year. Jennifer Hoggan and Rohini Chandrabhatla (right) with two other moms from the group. We did blood work after blood work and no one could really tell us what it was until we ended up in the hospital and, luckily, had some great doctors who had worked around the world and were able to diagnose her. ![]() We were diagnosed with mono, cold, upper respiratory infections, until she was in kidney failure. They really never diagnosed it as anything. doctors just put her on immunosuppressants for about a year. My daughter and Shari's daughter both had to have kidney transplants.ĭanielle Miller: Quinn’s eyes swelled and she had some growing pains. The inflammation ends up blocking blood flow to vital organs. Day one, they thought, “It’s probably a cold.” A week later: “It’s pneumonia.” And a week later: “Oh no, it’s Wegener’s.” We had a fairly quick progression. Rohini: All the symptoms are very vague: joint pain, fatigue. Jennifer: We went through, I think, four diagnoses before it was correct. ![]() īeck: The growing pains were the first symptom that you noticed, not necessarily realizing what it meant? I think of us on the phone call, all our kids were diagnosed with growing pains. Jennifer Hoggan: It really manifests differently in individual cases. Julie Beck: How did you find out that your kids had Wegener’s? This interview has been edited and condensed for clarity. Rohini Chandrabhatla, 51, a CPA who lives in Reston, Virginia Jennifer Hoggan, 53, who’s studying addictions counseling and lives in Coronado, California Camille Mark, 55, an inspector for the Canadian Grain Commission who lives in Prince Rupert, British Columbia Danielle Miller, 41, a social worker who lives in Chattanooga, Tennessee Shari Solis, 39, a retired counselor who lives in Northglenn, Colorado ![]()
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