A Berkshire woman who founded a vital support network for people with a rare and life-threatening blood disorder has been recognised in the King's New Year Honours list.
Jo McIntyre said she felt "shocked and really honoured" to receive a British Empire Medal (BEM) for her charitable services, which span 28 years. Her work began after her own diagnosis with Thrombotic Thrombocytopenic Purpura (TTP) in 1995, when she was just 24 years old.
From Personal Diagnosis to National Network
After relapsing multiple times following her initial hospitalisation, Jo sought connection with others who understood the condition. She placed a notice in 'Woman' magazine asking, 'Has anyone else got this?'
"I received just a handful of replies," she recalled. "From there, I grew TTPNetwork — with no money to run it — relying on donated stamps and envelopes to send out our first newsletters."
TTP is an extremely rare disorder, affecting just six to 10 people in every million. It causes blood clots to form in small vessels throughout the body, which is a medical emergency requiring immediate plasma exchange treatment. A staggering 30-50% of patients relapse after their first episode.
Jo's primary aim was to reach those who had been treated but were unaware of the risk of relapse, and to combat the profound isolation the condition can cause.
Building a Legacy of Patient Advocacy
Over nearly three decades, TTPNetwork evolved from a pen-pal-style group into a formally registered charity in 2021, with Jo as its Charity Director. The organisation now provides peer support, educational webinars, and information leaflets.
Critically, Jo has become a respected patient advocate, influencing national healthcare policy. She served as the patient voice on panels that established the first UK treatment guidelines for TTP and helped assess bids for what became nine specialist NHS treatment centres in England.
"I’ve now lived with TTP and worked on the network for longer than I lived without it — it’s become my life’s work," Jo stated. "I want to say a huge thank you to all those patients and families, and volunteers who engage with us."
A Lifeline for Patients and Families
The impact of Jo's work is deeply felt by the TTP community. Patient Sophie Meredith, diagnosed after the birth of her son, described the condition as "really isolating."
"Jo was the first person I ever spoke to who also had TTP," Sophie said. "The TTPNetwork has been life-changing... I don't know how I would have navigated those first couple of weeks and months without it."
Catherine Howell OBE, a retired chief nurse and now a Trustee for the charity, praised Jo's unique contribution. "She knows more about the disease than lots of healthcare professionals because it's so rare," Catherine said. "She's been instrumental in influencing policy."
Jo's dedication to charitable work extends beyond TTPNetwork. In 2011, she co-founded the charity Flag DV, which provides free legal advice to victims of domestic abuse, leading it for a decade.
The British Empire Medal marks a royal acknowledgement of a lifetime of turning personal adversity into a sustained force for good, offering hope and practical support to hundreds affected by a little-known illness.
