'I know what it feels like' - Irish Rugby star reveals battle with rare disease

Irish Rugby International James Lowe has opened up about being diagnosed with a rare disease as he helped officially launch the ‘I Am Number 17’ book.

The book showcases the stories and portraits of 17 people living with a rare disease across Ireland. At the launch, James Lowe spoke about his own experience living with Juvenile Idiopathic Arthritis (JIA).

The ‘I Am Number 17’ campaign was jointly launched by Rare Diseases Ireland (RDI), Rare Ireland and Takeda Ireland in February 2024 to increase understanding of what it is like to live with a rare disease in Ireland. The aim is to show that rare disease isn’t as uncommon as many believe, in fact 1 in 17 are affected by rare disease.

At the forefront of the campaign are the ‘17 Changemakers’ – 17 people living with a rare disease or supporting someone who has a rare disease, from across Ireland. The 17 Changemakers represent a wide range of age groups, diseases, ethnicities and regions across Ireland, their stories and unique experiences are integral to helping promote better understanding of rare diseases.

The book chronicles the story and impact of the campaign to date, as well as featuring the personal stories and experiences of the 17 Changemakers. The book is introduced by a special Foreword from James Lowe and is brought to life through photography by award-winning photographer, Julien Behal.

READ NEXT: 'His owner didn't care' - Anger as dog given away in pub dies after poisoning

Speaking at the launch at the Mansion House in Dublin, James Lowe, rugby player for Ireland and Leinster and ‘I Am Number 17’ campaign ambassador said:

“When I was asked to support the ‘I Am Number 17’ campaign, I didn’t hesitate. Having been diagnosed with Juvenile Idiopathic Arthritis (JIA) when I was 14 years old, I know what it feels like to not understand what’s happening inside your own body and to feel like no one else quite understands. I wanted to share my story to help children and families going through that same feeling of isolation and uncertainty.

"As a sports-mad teenager, not being able to play the games I loved was really tough. It took time, treatment and patience, but slowly I got back to the sports I loved and now I am playing rugby for Ireland.

"It is an honour to stand with these 17 Changemakers today, to hear their stories and officially launch this book. This campaign has shone a light on rare disease in Ireland in a way that’s never been done before. Not only has it been impactful in raising awareness amongst the wider public, but it also offers support and comfort to those living with a rare disease to know that they are not alone.”

The launch of the ‘I Am Number 17’ book comes at a timely moment following last month’s publication of the new National Rare Disease Strategy 2025-2030, a big step forward in improving the lives of the estimated 300,000 people living with rare diseases in Ireland.

Speaking at the launch Shane Ryan, General Manager at Takeda Products Ireland Ltd. said:

“At Takeda, we are thrilled to see the continued momentum of the ‘I Am Number 17’ campaign. It has been a privilege to work alongside incredible partners, Rare Diseases Ireland and Rare Ireland, to bring this book to life. We are especially grateful to the 17 Changemakers for sharing their stories and to James Lowe for his wonderful support of this campaign.”

“At Rare Ireland, we know first-hand the power of connection,” said Laura Egan, Rare Ireland. “Every day, we see how sharing stories can lift the weight of isolation for families living with rare conditions. The ‘I Am Number 17’ campaign gives those families a national platform, ensuring that the challenges and triumphs of our community are seen and understood. We are proud to stand alongside the 17 Changemakers and James Lowe in amplifying the voices of those living with rare diseases in Ireland, and making sure that the rare disease community in Ireland is not forgotten.”

"The ‘I Am Number 17’ campaign has changed the conversation about rare diseases in Ireland,” said Vicky McGrath CEO of Rare Diseases Ireland. “By putting real people's experiences at the centre of our campaign, it breaks down barriers, challenges misconceptions, and sparks the understanding needed to drive real change. As we move forward with the campaign, our goal is to keep building momentum for change. We urge policymakers, healthcare providers, researchers and the public to get involved in this awareness raising journey. A simple way to start is by asking: 'Is it rare?' That question can open the door to greater understanding and better support and care."

For more information about the campaign, how to get involved and learn more about rare diseases visit: www.iamnumber17.ie.