Embracing Life with Waldenstrom's: A Patient's Perspective on Positivity, Technology, and Empowerment

For Bob Perry, a former police officer and army veteran, the diagnosis of Waldenstrom's macroglobulinaemia (WM) in 2015 was unexpected, but his resilient mindset has helped him confront the challenge head-on. Sanius sat down with Bob as he shared his inspirational journey, emphasising the power of positivity, the role of technology in empowering patients with rare diseases, and the importance of patient advocacy and shared decision-making.

Bob’s path to diagnosis was marked by puzzling symptoms, including neurological issues and debilitating fatigue. "I fell over three times in about a year. And because my arms and shoulders wouldn't work, I couldn't break my fall and I knocked myself out”, he explained. “It was very, very frustrating," he recounted. It wasn't until a locum GP recognised the concerning blood test results that Bob received the life-changing diagnosis of WM, a rare type of non-Hodgkin's lymphoma.

Despite the initial shock, Bob’s military background (he was formerly a part of the legendary SAS) -? and the "Who Dares Wins" mentality this experience gave him - played a pivotal role in his approach to living with WM. "I don't tend to reflect on the fact that I've got an incurable blood cancer. Of course I do, but it's manageable. And at the moment, I'm managing it," he said. His unwavering optimism and determination to live life to the fullest have been instrumental in his journey. "I enjoy a challenge. And yes, I found it very difficult sometimes, but I’ve tried to support other people too -? I was a patient support manager for a while, where pretty much every day I would take phone calls or ring new patients who wanted to talk to me," Bob explained. Bob certainly does enjoy a challenge, cycling from London to Paris last summer to raise money for charities supporting people living with WM - an extraordinary accomplishment that he intends to repeat this summer.

Bob’s advice to newly diagnosed patients reflects his positive outlook: "You're living with WM. Don't let it define you. It's living with me, it can come along for the journey, but it's not going to define me and it's not going to kill me."

Bob’s enthusiasm for embracing technology in managing his condition was evident throughout the interview. As a member of Sanius Health’s ecosystem, he shared how his data provided invaluable insights to his consultant haematologist, Dr. Helen McCarthy. "I printed off all the data I got from the app and showed it to her. It’s got my oxygen levels and my sleep pattern, my temperature and my pulse. My consultant turned to me and said ‘oh, this is really good," he mentioned.

For Bob, technology empowers patients to take an active role in their care. "It's allowing me to take more control of my health. Suddenly I'm not this guy waiting on everything that my doctor says when I see them once every six months.? I can take a daily interest in my condition," he said. "Every day since then, I've done my scores religiously and I’m constantly making sure that everything’s normal.”

Bob’s advocacy for patient-centred care and shared decision-making was a recurring theme throughout the interview. He expressed his desire to be more involved in his care team's discussions, recognising the value of patient input and collaboration. "I would love to be part of my MDT meeting. My consultant and the registrar and the radiologist and the oncologist all get together and they talk about Bob Perry. Why can't Bob Perry be there? I’m not sure it will happen, but that would be amazing," he said.

While acknowledging the potential challenges, Bob emphasised the importance of patients being proactive and engaged in their care. "So many of us, especially British people, we go to see our doctors and we think they're gods. And we say yes or no, sir. And whatever he or she says we don’t challenge it. But I’ve learnt how to communicate and advocate for myself in that way," he advised. "And sadly, not everybody can do that."

Bob’s perspective highlights the transformative potential of technology, patient empowerment, and shared decision-making in the rare disease space. By leveraging data from wearable devices and actively participating in care discussions, patients like Bob can contribute valuable insights and advocate for personalised, patient-centred care plans.?

Moreover, Bob’s experience underscores the importance of access to specialised care and expertise in managing and monitoring rare diseases like WM. "Sadly, a fair few of our community are based at small hospitals in rural communities where there might be one haematologist, and the clinician has heard of WM but has only got one patient. I feel sorry for those people, and that’s something that has to change" he acknowledged.

As the management of rare diseases like Waldenstrom's macroglobulinemia continues to evolve, Bob’s story serves as an inspiration for embracing life's challenges with resilience, positivity, and a commitment to harnessing the power of technology and patient engagement for improved outcomes. He witnessed it first hand at Sanius Health’s inaugural Haematology Patient and Carers Congress in May:? "It made me see that it was all about empowering us as patients to be part of the system, and part of the solution.”

Moreover, his advocacy for patient-centred care and shared decision-making highlights the need for healthcare systems to prioritise collaboration, empowerment, and access to specialised expertise in the rare disease space.

By sharing his journey, Bob hopes to inspire fellow patients and raise awareness about the importance of embracing new technologies such as Sanius’, fostering open communication with care teams, and maintaining an unwavering positive outlook in the face of adversity. "I think the technology is really good. It's a good tool for me as a patient, for us as a community of patients, it makes it so much easier to navigate," he concluded.

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