The Friends Whose Kids All Have the Same Rare Disease
“It’s a backwards kind of friendship. You get in with the most vulnerable parts of your heart first.”
Every week, The Friendship Files features a conversation between The Atlantic’s Julie Beck and two or more friends, exploring the history and significance of their relationship.
This week, she talks with a group of parents whose children all suffer from the same rare disease—Wegener’s granulomatosis (also known as granulomatosis with polyangiitis), a chronic illness that causes inflammation of blood vessels which can affect organs such as the lungs and kidneys. The parents found one another online after their kids were diagnosed, eventually forming a support group on Facebook that now has about 100 members. In this interview, five of the group’s members discuss how they formed a “backwards” friendship—bonding over the toughest things in their life before they got around to small talk.
The Friends
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
This interview has been edited and condensed for clarity.
Julie Beck: How did you find out that your kids had Wegener’s?
Jennifer Hoggan: It really manifests differently in individual cases. I think of us on the phone call, all our kids were diagnosed with growing pains [at first].
Beck: The growing pains were the first symptom that you noticed, not necessarily realizing what it meant?
Rohini Chandrabhatla: Totally.
Jennifer: We went through, I think, four diagnoses before it was correct.
Rohini: All the symptoms are very vague: joint pain, fatigue. 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. The inflammation ends up blocking blood flow to vital organs. My daughter and Shari's daughter both had to have kidney transplants.
Danielle Miller: Quinn’s eyes swelled and she had some growing pains. [The] doctors just put her on immunosuppressants for about a year. They really never diagnosed it as anything. They thought it was a tumor, possibly. We were diagnosed with mono, cold, upper respiratory infections, until she was in kidney failure. 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.
Beck: I imagine when it’s something that rare, a lot of doctors have probably not seen it before.
Danielle: Exactly.
Camille Mark: Kai presented a lot differently—he had severe nosebleeds for about a year. Weight loss, chills, not eating. By the time that he was diagnosed, he was in the hospital. He was hemorrhaging out in his lungs, his kidneys were failing, his sinuses were a mess. At that point, they couldn’t deal with it where we lived. They medevaced him out to a larger facility.
Rohini: I don’t know if you ever watched that TV show House. After diagnosis, I watched every episode. I think at least on three episodes they brought up Wegener’s. But one of the things Dr. House said a lot was, “When you hear hooves, you don’t assume a zebra.” That’s exactly how we were all treated. “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. I think that’s what delays diagnosis.
Danielle: A young man who goes to school with my daughter—it's a crazy story, [they] actually dated. The parents called and said, “These are the symptoms Luke is having. 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 doctors had finally seen this. But one kid can make a difference. Each time one gets diagnosed, a doctor learns something. 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. They were all waiting to come into our tiny room. 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.
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. That gave us a built-in support system in the hospital in the very beginning.
Beck: How old are your kids now?
Jennifer: Our daughter Abigail is now 20. She was diagnosed at 14.
Rohini: My daughter Juhi just turned 19 last week. I think. She was diagnosed when she was 12.
Danielle: Our daughter Quinn is 19.
Camille: Kai was diagnosed when he just turned nine and he is almost 18.
Shari: Shaelyn is 17 and she was diagnosed at 10.
Beck: Did you find this parents’ group not long after your kids were diagnosed, or was it something that was formed later, after you had already been dealing with this for some time?
Danielle: Shari is actually who I found while lying in the hospital with Quinn, once we got the diagnosis. I was lying in the hospital bed looking for people, not really knowing what to do next. Just knowing that they had told us this is not common, and we didn’t know anybody around here.
Beck: You started Googling around for people who also had this?
Danielle: Yeah. I just started staying up all night Googling. I found Shari [on a public group for adults with Wegener’s] and I Facebook-messaged her.
Shari: To be honest, those adult groups, they didn't help necessarily. Except to connect us to each other.
Rohini: In my case, I generally don't post things like that, but I was on the adult group just saying, “Please send some positive thoughts. My little girl's going in for a kidney biopsy.” One of our friends, I think Stephanie in New Jersey, she reached out saying, “You know what? We have a group for kids. Let me connect you with Jennifer,” who I think was an administrator of the group. The rest is history.
Beck: Can you tell me about the origins of the private Facebook group?
Jennifer: I had found the adult Wegener’s page. I saw Danielle’s post—she was the first person I messaged. She said, “Hey there's a couple other moms I know.” Once there were about, I don't know, 10 of us, we decided to start a group. We needed it to be secret so that no one could see what we were saying. Some of us can't be public because of family situations.
Rohini: We didn't necessarily want to out our kids. They were struggling and not knowing whether to go tell the world about it. My daughter, particularly, doesn't like to talk about it.
Danielle: It became, I guess, the parents’ battle, because we wanted to help them while they were trying to still be normal kids.
Camille: I found the group four years into Kai’s diagnosis. I was on the adult Facebook page. Someone tagged me and said, “Hey, let me put you on to this group for mums.” At this point, I was desperate. I was falling apart at the seams, so this group of ladies was my lifesaver.
I'm getting emotional. I had nobody because there was nobody that I knew in our area [who’d been through this] to be able to have the emotional support and to find out more information that the doctors may have not mentioned to you. We trade a lot of information too.
Jennifer: Medications, treatment plans.
Beck: It's kind of like a brain trust.
Jennifer: It’s such a rare disease. Almost all of us were told, “Don't Google it.” That's not reasonable, to tell a parent who is scared to death that their child is dying.
Rohini: What you shouldn't do is image Google.
Jennifer: You say “brain trust,” and that's a fine phrase, but it's really an experience trust. Because if I know how you talk to your daughter about stretch marks, for example, that's going to help me. Or if I know how your son responded to steroids and how quickly the moon face went away as he went down on his dose, that's going to help me. You know?
Rohini: Honestly, there is a wider commentary when you look at all of our different treatment plans. Yes, right now most of our kids are in a good place, but the disparity in health care [stands out.] Like Washington, D.C., has big teaching hospitals. But if you're in a small little town like Camille, having to travel—what, seven hours?—just for the biggest hospital, it's insane.
Camille: Our biggest hospital is a thousand miles away. Sometimes if we're driving or going by ferry, it takes us two days to get there.
Beck: Obviously with a Facebook group of 100 plus, you're not all going to be best friends. But how did you guys specifically, the people on this call, become close?
Camille: More than just sharing information, it's emotional support. You have friends and family who don't understand.
Danielle: This group is what I always go back to, no matter what. This is the first place that I go. Or the second, I guess, after my husband.
Shari: Just last year Shae was hospitalized again, and no one else in my life understands the terror that runs through your body when you are in the hospital again after you've been doing well. These women, they don't even question why I'm so afraid. They get it. As far as mental health goes, it's so important. I don't think that I would've survived the first couple of years without these women.
Jennifer: Our kids are functioning, they're at college, they look like normal kids, but we know inside there's this craziness going on and the shoe could drop at any moment. We carry that with us. My other friends, they get it, but at the same time they’ll say, “She looks fine. You’re done, everything's fine, she's all cured.” But we know there isn't a cure; we’re managing.
Danielle: Quinny has actually lost several friends from cancer. But we always hear, “It's not cancer, right? She's okay, right?”
Rohini: I hate to feel that way, but it just makes me so mad.
Danielle: Right. Cancer is huge, but it's different. Wegener’s is just a different kind of battle that people don't understand. When we were diagnosed that was the first thing we heard, “At least it’s not cancer.”
Jennifer: It’s a backwards kind of friendship. You get in with the most vulnerable parts of your heart first. There's no casual chitchat at the PTA meeting first. It's just immediately jumping in with both feet. I am scared to death or I don't know where my friends have gone. Why aren't people supporting me? The different reactions that parents have when they come into the group. They generally feel super alone and super, super raw. Then out of that there might be someone who connects with me personally. I think Rohini and I clicked when we met in person. Then we started talking about books and stuff.
Beck: It’s like you evolve from the really deep, hard stuff to the more trivial stuff.
Rohini: Absolutely. Comparing prom pictures and homecoming dresses, those kinds of things. These were new milestones for us; we celebrated with each other. I think a lot of us now are talking about our daughters dating, and how much they tell boys about what's going on with them.
Camille: It’s like we speak a different language. When I talk to other people, they give you a blank look. They don't want to hear it because they don't understand it. When you talk to these ladies they understand the language, they understand the emotional part of it, the medical part of it, all the ups and downs.
Beck: Have you guys met in person? Have you ever had a big gathering?
Jennifer: That's been my dream for so long. Obviously when you have catastrophic medical bills … there are some families that have been wiped out because of this. Then some families just don't start off with a lot of resources to begin with. Getting us together, I don't understand how we could ever do it. When I've traveled I've tried to put on the group, “Hey, I'm going to be in this part of the country if anyone wants to meet up.” We have a big country and then there's families in other countries. It's not practical for us.
Beck: So you’ve met some people one-on-one here and there.
Jennifer: Yes. I've met everybody but Camille on this phone call. Then I've met probably about six other parents.
Beck: Have your kids ever met one another, or have they found your group helpful to them too?
Shari: Do you guys remember Shae making “Kids With Cups”?
Rohini: Yes.
Jennifer: The first group we had on Facebook, the secret group, was called “Moms With Cups.” I wound up starting a different group for parents, moms and dads. But when we just had “Moms With Cups,” then Shaelyn made “Kids With Cups.”
Danielle: The kids would FaceTime each other and they would text message.
Beck: Why were the Facebook groups called “Kids With Cups” and “Moms With Cups”?
Jennifer: Because we like to drink coffee. Like you go and have coffee with your friends, we couldn't do that. But we could meet online.
Beck: Oh, I see. It's the virtual coffee shop.
Danielle: We were very sleep deprived at that point.
Jennifer: The other thing I just want to say while we're all on the phone call is I love you guys so much. This is the best to hear your voices.
If you or someone you know should be featured on The Friendship Files, get in touch at friendshipfiles@theatlantic.com, and tell us a bit about what makes the friendship unique.