No longer alone: Jo’s mission to transform TTP support and advocacy

No longer alone: Jo’s mission to transform TTP support and advocacy

When Jo McIntyre was diagnosed with thrombotic thrombocytopenic purpura (TTP) in 1995, she faced an overwhelming reality: little to no information was available about her rare condition.

At the time, the internet was not a household tool, and resources were limited about the rare and life-threatening blood disorder that causes blood clots to form in small blood vessels throughout the body.

“It was honestly bewildering,” Jo recalled. “I was told, and believed, I was just unlucky and that it was a one-off. There wasn’t just little information available online—there was no ‘online’ at all, certainly not in most homes. The tiny local library didn’t have much to offer either.”

Jo, who lives outside of London, United Kingdom, shares how her personal experience with TTP shaped her approach to patient advocacy and inspired her to create a national organization called TTPNetwork to support patients like herself.

Sounding the alarm

It’s 30 years later but Jo still vividly remembers her initial symptoms. At that time, she was in her early 20’s and working as an emergency call center responder. She was accustomed to being tired amid working long shifts.

Despite her tiredness, Jo also experienced headaches and alarming bruises on her legs. A friend encouraged her to go to the doctor after seeing the bruises.

Her bloodwork showed dangerously low platelet levels, which sounded the alarm to her doctor. Jo was immediately admitted to the intensive care unit and spent four weeks in the hospital.

“I was fortunate that a hematologist saw my bloodwork and figured out the TTP diagnosis,” Jo said. “It was all so rare that no one else on my care team had ever seen a patient with TTP.”

With the distress and loneliness that came with her hospital experience, Jo was determined to support other patients or those who were less able to speak up for themselves.

Finding a voice for patient advocacy

Following her discharge from the hospital, Jo was eager to learn more about TTP but she could not find any resources. She found herself combing through scientific papers in academic medical journals, sitting side-by-side with a medical dictionary to understand the technical terms.

She came up with a plan to try to find others who were also affected by TTP.

“I wrote to a women’s magazine to see if anyone else had what I had, thinking maybe we could benefit from each other,” she said. “Because it’s quite difficult to talk to non-TTP people about TTP—they simply can’t understand your experience.”

She was stunned by the response. What began as a small effort to connect evolved into TTPNetwork, a now-vital advocacy and support organization for TTP patients.

“I had the wit not to have replies sent to my home address, so I used my dad’s shop address,” she said with a laugh. “I think the article said I wanted to start a self-help group, which was the ethos—helping ourselves by having shared experiences. I never dreamed I would be advocating for others or running a national patient advocacy group with an international reach.”

Growing a support system

Over the years, TTPNetwork has grown into an essential resource for patients and caregivers. In tandem, the landscape of patient education and support has drastically changed since Jo’s diagnosis.

Jo shared that a key turning point for patient engagement in the U.K. came when Professor Marie Scully began hosting bi-annual patient days in London nearly two decades ago, providing a wealth of resources and support for TTP patients.

“For a long time, the only leaflet our organization had was ‘What is TTP?’ but it was a start, and very useful for a lot of patients,” she said. “Now, we have a much broader range of resources, from basic explanations to in-depth videos and scholarly articles. I wish I had something like this when I was first diagnosed. I’m the type of person who feels more in control when I have knowledge.”

The evolution of TTPNetwork took time, and as technology evolved, so did the organization.

In the mid-2000s, the social media platform Facebook helped TTPNetwork expand its community worldwide, not only in the U.K. Today, the organization considers itself “national with an international reach,” supporting patients from countries across the globe.

TTPNetwork also became an official registered charity in England and began partnerships with key pharmaceutical companies. In 2023, it organized its inaugural patient event outside of London.

Today, Jo serves as TTPNetwork’s Operations Director. Amid her many responsibilities, she also collaborates with organizations to advance research and patient care. Recently, she partnered with the International Society on Thrombosis and Haemostasis (ISTH) to serve as a patient representative on its TTP Guidelines Panel.

“Being invited to work on the international guidelines is a real honor,” Jo said. “Guidelines are important and not just for doctors and nurses.  They enable patients to see the treatment they should be expecting to get offered. Also, from a personal perspective working with this group allows me to better understand the international landscape of TTP, which in turn influences my work for patients.”

Looking back and moving forward

This year marks an important milestone: 30 years since Jo’s initial diagnosis. Today, she lives with her husband Mark, their dog and two chickens. She looks forward to continuing to expand TTPNetwork.

“I’m still here, and I have lots of work still to do,” she said. “TTPNetwork is holding its second patient event this year, and we are also collaborating with some international patient groups to create a global alliance. It’s an exciting time.”

For Jo, the journey has always been about making sure no patient feels as lost as she did back in 1995.

“I remember feeling completely alone in those early days, like I had this rare condition that no one else understood,” she said. “Now, through TTPNetwork, we’ve built a community where patients can find support, information, and a voice in their care. That means everything to me.”