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Like so many, Andy Provencher’s journey to a diagnosis of IgG4-related disease was shaped by fear, uncertainty and misdiagnoses. His wife, Katharine’s, personal connection to the disease, combined with her professional expertise in advocacy, made her a natural fit to help lead the newly formed patient group IgG4Ward! Together the couple are driven to changing the landscape for all patients with this rare misunderstood condition

Written by Emma Bishop, RARE Revolution Magazine

Interview with Andy Provencher, IgG4-RD warrior and Katharine Provencher, director of patient advocacy, IgG4Ward!

It was a freak accident in June 2020, that first set Andy on a long and uncertain path to a rare disease diagnosis. Until this point he had not experienced any significant symptoms to suggest he had a rare autoimmune condition, other than some breathlessness when going up stairs, which he put down to getting older. However, after suffering a mountain bike crash, breaking his collarbone, ribs and puncturing his lung, he was admitted to the emergency room. It was here doctors told him that scans had revealed he had a very aggressive form of cancer.

Over the next year, Andy saw numerous doctors and underwent multiple tests, during which time he faced considerable anguish. He explains,

“I was repeatedly told I had cancer, and then I would have a biopsy which showed up negative and so we would get a breath of fresh air and think maybe this isn’t cancer. And then I would get another scan done, and doctors would say ‘this is definitely lung cancer’. And so it went on.”

Andy

Finally, in May 2021, Andy’s biopsy results were sent to Dr John Stone at Boston Massachusetts General Hospital, who Andy describes as “the source of truth” when it comes to his condition. It was just weeks before Andy was due to start chemotherapy treatment for his suspected lung cancer. Dr Stone identified IgG4-related disease (IgG4-RD), finally providing Andy with an accurate diagnosis and treatment plan—ending the prolonged period of uncertainty and misdiagnoses. Andy describes his immense relief and says he felt like that was the first time he was treated with compassion.

Andy shares how the roller coaster path to diagnosis, being repeatedly told he had an aggressive form of cancer, to that diagnosis then being challenged, took a significant toll on his mental health. The fear of a terminal diagnosis weighed heavily on him, especially being only 40 years old, with three young children.

Andy describes himself as a typical guy who would generally push through any challenges and put tough situations on the back burner—a coping mechanism to allow him to deal with what was in front of him at the time. Always a strong advocate for mental health awareness, addressing his own mental health, however, was a new experience for him.

“I’ve always been in tune with mental health, but never for myself. I’m used to watching out for my buddies that seem a little quiet and I always check in on those I know are having a hard time. But I never focused on myself.”

Andy

Despite his stoicism Andy recognised the importance of looking after his own mental wellbeing, and, while he says it has been a big undertaking, it is something he is committed to.

Prior to his diagnosis, Andy was very active and worked in a physically demanding job in retail construction, working long, often unsocial hours and travelling frequently. Even at home, he would always be busy fixing the house or exercising. Since his diagnosis, Andy says he has had to significantly slow down and adjust his daily life, leaving his job in construction.

He explains how he has to carefully manage his energy expenditure as any physical exertion takes its toll on him. Tasks he once found simple, such as raking the yard, can now leave him feeling drained the next day, and so most activities require advanced planning and pacing. “I know how I’m going to feel if I exert a certain amount of energy and I plan for it the day before. That’s how my disease presents—anytime I exert energy, I pay for it and so I plan ahead.”

To cope with this change to his lifestyle, Andy has also incorporated more restorative activities like yoga and meditation into his routine to manage both the physical and mental impact of his condition. He still enjoys cycling and has a real appreciation for what his body is now able to achieve. “I’m a little less active, but I make it count more. Now when I go on a bike ride, I enjoy every pedal stroke.”

Practising self-care has been key to Andy coping with this considerable change to his life.

Andy believes self-advocacy is crucial for patients navigating a rare and poorly understood condition like IgG4-RD, as many doctors simply do not have the familiarity or expertise. “It’s not that doctors don’t want to learn about IgG4-RD, it’s just that there are 1000s of diseases like this; it can be overwhelming.”

He shares that, without having the knowledge and tools to advocate for himself, the process of getting an accurate diagnosis and appropriate care would have been even more difficult. He also credits his wife Katharine’s support as key in this respect, attending medical appointments with him to help retain, and make sense of, the burden of information. But he recognises that not everyone is so fortunate—many face this journey alone.

Working as a clinical social worker supporting the mental health of children for over 20 years, Katharine Provencher was well-versed in advocating for the needs of others. However, living through the fear and doubt of her husband, Andy’s, diagnostic odyssey was a whole new experience. She explains how the relentless testing and misdiagnoses were frustrating for her, both as a wife and as a social worker. “There were too many holes and red flags in the process and I felt strongly that I needed to advocate for Andy.”

Initially motivated to help her husband, her mission became much bigger when Dr Stone invited Katharine to be a part of a new patient organisation he was setting up, called IgG4Ward! It was the perfect opportunity for Katharine to apply her advocacy skills on a boarder scale so she took on the role of director of patient advocacy in February 2024. “I met with a group of patients to hear their journeys and they were so similar to Andy’s in terms of being told they had some really scary diseases, or were diagnosed with cancer, only for that diagnosis to be taken back.”

Katharine explains how, upon receiving Andy’s diagnosis, they, like most people, researched the condition on the internet, and were met with some frightening statistics. She feels lucky that she had Dr Stone to consult with but recognises that not everyone has that reliable source. She wants to increase the education and awareness of the disease and provide resources and a supportive community for those navigating life with IgG4-RD.

“My drive is to provide people with the right information, so that when they are diagnosed and they’re scared and they’ve already been through so much, they have somewhere to go. There are so many people that need support, guidance and resources.”

Katharine

Katharine believes some of the key challenges that are specific to those with IgG4-RD, are misdiagnosis and delayed diagnosis, a significant knowledge gap among physicians, a lack of accurate and reliable information and resources, and feelings of isolation. To address these challenges IgG4Ward! was founded in November 2023 by Dr Stone, and is the only patient organisation dedicated to serving patients with IgG4-RD in the US.

Here are the ways in which IgG4Ward! supports and empowers the community:

Providing accurate information and education
The overriding goal of IgG4Ward! is to be a trusted source of accurate information, curating and disseminating accurate, up-to-date information through the website, webinars and other educational resources.

Building a supportive community
The organisation connects patients and caregivers by facilitating support groups and creating online communities to foster a sense of belonging and shared experience. This year they held their first Jamboree which attracted almost 200 hundred people.

Improving access to care
A key objective is to establish centres of excellence and patient ambassador programmes to ensure patients have access to knowledgeable healthcare providers and a coordinated, multidisciplinary approach to their care.

Bridging the gap with medical professionals
IgG4Ward! has created a physician network to facilitate knowledge-sharing and provide resources to healthcare providers. Katharine says the physicians they are working with are eager to learn and very receptive to accessing the insights the patient group can provide. Her aim is to extend the learning to general practitioners (GPs), to facilitate faster referrals and more timely diagnoses.

Advocating for research and treatments
The organisation aims to support and advocate for research into new treatments and therapies, whilst connecting patients with clinical trials and other research opportunities.

For Andy, and others like him, the formation of IgG4Ward! is a lifeline to support, information and community. He says when he was diagnosed there was nowhere to turn, which was isolating. He shares how impactful it was to attend the first jamboree. “There were patients, physicians, industry, people who had travelled from all over the world to be there, giving their time and energy to the cause. It was so wonderful to see and very humbling to be a part of it.”

Katharine shares what she sees as the immediate goal for IgG4Ward!: “My main call to action is to start with awareness and education to decrease the amount of time people are searching for answers and to get them treatment quicker before there is irreparable damage.” Katharine and Andy are driven by their own personal experience of searching for answers and the toll it took on their lives. While they acknowledge the suffering they went though, they also feel gratitude that they had the skills to advocate for Andy’s needs and access to expertise. But they know not everyone is in the same position, which is why they are dedicated to the mission of IgG4Ward!

“Each time I retell my story, I relive another bit of trauma, but I want to do all I can to move the mission 4ward!”

Andy

“Andy’s journey toward diagnosis is typical of that of so many people living with IgG4-RD: rocky, frustrating and all too often, terrifying. A series of well-intentioned healthcare providers were unable to provide the guidance that Andy needed simply because they did not know enough–or had not heard of–this condition. Thankfully, Andy eventually got the help he needed and has made enormous strides to physical and emotional recovery. To his credit, and Katharine’s, he has helped turn his experience into ways that all can learn, so that cases like his may be rarer in the future”.

Dr John H Stone

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Articles within this digital spotlight are for information only and do not form the basis of medical advice. Individuals should always seek the guidance of their medical team before making changes to their treatment.

This digital spotlight has been made possible with sponsorship from Amgen. All opinions are those of the contributor. RARE Revolution Magazine retains all copyright.

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