Late Vasculitis Diagnosis Steals Nearly One Decade

Christine Gerchow was in her final semester at Villanova University in 2002 and planning for a promising career, when at 21 she went to the emergency room with a high fever after vomiting blood. Her white blood count was extremely high, and she nearly died during a medical “code blue” called in the hospital.

No one knew what was wrong with Christine only stating that she had likely been affected by some kind of septicemia episode. The health care team got her well enough to go back to school after two weeks in the hospital. She graduated in May 2002, but had to go to summer school to make up for her missed classes because of the trips back and forth to the hospital and medical offices.

It took seven years, multiple doctors and hospitalizations, for her to discover what was going on with her body. 

After graduation, Christine joined her family as they moved to the San Francisco Bay Area. On arrival, Christine, perniciously developed symptoms such as weight loss, fevers, rashes, severe myalgia, swelling in her limbs, neuropathy, and life-changing exhaustion.

She continued to seek treatment, but no one was able to diagnose what was causing her symptoms.

“At the beginning they asked about infections, things like mono and lyme disease,” Christine said. “I had months of work ups and treatment. As time passed, I developed serious infections, which meant more suffering; I had pneumonia multiple times, cellulitis, viral meningitis. Each time I would get weaker and lose more functioning. I was a shadow of myself.”

Christine was referred to a rheumatologist who became preoccupied with a lupus diagnosis, which only set things back further as the rheumatologist awaited confirmation rather than investigate other disease processes.  

Ignored Indications of Vasculitis

“I even had a positive skin biopsy for vasculitis which exploded on my legs during a pneumonia infection,” Christine said. But she was waiting for this ANA result. She was also worried that the more aggressive treatments involving immunosuppression wouldn’t be appropriate for me as a female in my child-bearing years.”

Christine’s mother, Pamela Gerchow, kept asking questions, and became very frustrated with the doctors as well. “During one hospitalization, they said they didn’t think Christine would make it,” Pamela said. “Do you know what it’s like to hear something like that about your daughter? All while feeling helpless as not enough was being done to identify what could be making her so sick? “

All along, Christine was fighting to save her own life. As a former university student body president, she had lost a fellowship for graduate school at Stanford and job offers in finance due to illness. Utilizing her research skills, Christine explored doctors, treatment centers, and immunology, even subscribing to the New England Journal of Medicine. Despite her efforts, she grappled with profound loneliness, depression, and grief as she experienced her body betray her and her peers advance in their careers and lives, all as she spent her twenties devastatingly ill and reliant on her family and in-home health care support to help her function.

Those were dark days for Christine. And the days became months and years as she experienced infection setbacks, hospitalizations, and further functional decline.

Pamela and her husband, Rich, Christine’s father, were furious with how the medical professionals seemed laser focused on waiting for Christine’s profile to fit lupus. And then to fit Crohn’s disease after Christine’s endoscopy showed signs of widespread inflammation. Christine agreed.

Delayed Diagnosis Leads to Desperation

“They did a lot of punting and waiting,” Christine said. “I was home, suffering and had no job, no autonomy. I was dependent on my family and my home health team to help me eat, bathe, and ambulate. And I wasn’t getting better. It was psychologically, emotionally and spiritually brutal.”

Christine said at one point, during the throes of crippling meningitis head pain, she wanted to end her life. “The pain was too much, and no one seemed to be able to help.” 

Pamela and Christine were so desperate they went chasing treatments all over the country.

“What happens when it goes year, to year, to year,” Pamela said, “is you get desperate, and you listen to people who are fakes promising a cure. You drive all over the place and try to do anything to make the nightmare end.”

Finally, it was a pediatric immunologist from Stanford University, Dr. David Lewis, who took the time to run a more detailed immunological panel, showing clear abnormalities in Christine’s immune functioning, especially certain proteins and complement levels. From there, Christine saw a new rheumatologist Dr. Molly Magnano. “Dr. Magnano looked at my records and in about 30 minutes identified vasculitis and a treatment plan. The treatment, with steroids and methotrexate, changed my life in six weeks – after almost a decade.”

Still Grieving

“I lost two-thirds of my 20s and I grieve that loss now, still today, and I am in my 40s,” Christine said. “It’s heavy to consider all the costs I incurred in terms of sheer physical pain, even agony at times; and then the psychological, emotional, financial, and social costs because of treatment that wasn’t given for years. Then you add that to the costs my family incurred watching me endure what I did – the hospitalizations, the misery. It was medical trauma for me, and vicarious trauma for them. And then if you think about the costs to communities, it makes you realize how expansively damaging it is to delay diagnosis with a disease as serious as vasculitis.”

Pamela is still angry over all the years her daughter suffered without a diagnosis and without a doctor who cared enough to investigate her symptoms more thoroughly. That delay left Christine with debilitating effects even today.

“I’m pushing 70 and it’s been hard for me to let go because I can’t do some things that I used to be able to do for her,” Pamela said. “It’s been emotionally hard for me to see her suffer like this. I can’t even describe it.”

Christine has been left with damage from all the years her vasculitis – which she describes as “a disease of pain and suffering, a hurting disease” – went untreated.

“The disease can change forms and types,” Christine said. “I have had significant shifts in my lab work as of late. I get a lot of infections, especially skin infections. I very much experience this disease every day. At least once a week I am dealing with low grade fever, throbbing pain and neuropathy in my legs. And exhaustion that takes your breath away, knocks you off your feet.” 

Her latest blood work indicated an advancing inflammatory process is happening and her treatment is becoming more aggressive.

Living with Vasculitis

People who see Christine, who earned her Ph.D. at UC Berkeley and works as a psychologist and health care administrator in jails and juvenile halls, don’t always realize how sick she is. She always wears a mask when she is out, and she takes a cane chair wherever she goes. When her vasculitis is flaring, Christine also utilizes workplace accommodations, as directed by her rheumatologist.

“The pain in my legs can be highly debilitating,” Christine said. “I try to make life work for me.”

While her parents live nearby, Christine is now married and parenting two beautiful children she adopted with her husband, Jonathan. Jonathan is her care partner and she can rely on him when she’s not feeling well. Christine said Jonathan knew about her diagnosis before they got married and he has always been there to support her. He attends Vasculitis Foundation patient and care partner programming and, as an occupational therapist, is the perfect care partner Christine could imagine.

Christine is grateful that there is support for partners and families because she recognizes that the disease can have a “profound effect on a family system.”

Even though she has an uncertain future, Christine keeps a positive mindset. She can explain her disease to her two daughters in a way that is honest and age-appropriate, sharing with them that there are times when she is not able to do certain things. Christine feels that the disease offers her the chance to model what it is to set healthy boundaries, especially as a woman. She said her daughters are both understanding and thoughtful with her, often offering to bring her ice packs or show her a YouTube short that will make her laugh.

The VF Makes a Difference

Christine also relies on the Vasculitis Foundation to keep her spirit buoyed and to offer her access to experts when she has questions or concerns about symptoms. She recently put together a list of the four reasons she relies on the foundation.

  1. Education and empowerment: We might get 20-25 minutes with our rheumatologist if we are lucky! Apart from the Vasculitis Foundation events, there doesn’t exist any option for us to spend hours with vasculitis experts when they are not just talking to us about the latest research and treatment but talking with us!For instance, I sat with Dr. Villa Forte at the Chicago Symposium and it was incredible to learn more about her background and for her to answer my vasculitis-related questions. The conferences, conventions, and fellowship make me confident that my treatment can be guided by the most advanced research available. I didn’t have this when I was first getting sick and am so glad it exists for patients today!
  1. Fellowship + Fun: As patients, we need time to be in community with those who have an unspoken understanding of what it means to face pain and inflammation at the cellular level, across our blood vessels. We also need to experience joy and fun. The Foundation’s events (like playing on Kahoot or seeing Dr. Merkel host trivia night) allow us to be suspended in that joy and for even a moment to forget that we live with this challenging disease. 
  1. Training + Support: The year-round programming is outstanding. Support groups allow us to make new friends and enjoy fellowship. We discuss parenting, work, self-worth, pain management, and coping with transient depression during flares. The key is that all of this is discussed in the context of our lives with vasculitis. This is meaningful. The other bonus is that the Foundation offers programming for our partners and families, as this disease can exert a profound effect on a family system.
  2. Ongoing communication: Social media campaigns, email blasts, and more. I love the content and frequency of VF communication. I feel part of something. Sometimes seeing that email pop up or the Facebook post show up on my feed is enough to remind me I am part of something, part of a group that understands, and aware that programs and events exist specific to what I am coping with and have been coping with for more than two decades. These small “doses” of outreach mean a lot when I am feeling lonely and isolated because of my symptoms.

 

Christine’s list illustrates why your gift is so important to the Vasculitis Foundation. The foundation is helping patients live every day and it is supporting their care partners and families as well. Feeling empowered and educated is vital to all vasculitis patients.