Penny's story: Inspired by our research to leave a gift in her Will

Leaving a gift is "a small token of my appreciation"

Remembering her mother's experience of living in pain with rheumatoid arthritis, Penny received a diagnosis of axial spondyloarthritis. After experiencing the benefits of new drugs and treatment as a result of Arthritis UK research, she decided to leave a gift in her Will to help improve health outcomes for future generations.

What first inspired you to leave a gift to Arthritis UK in your Will?

"I have left money in my Will because of the amazing work you do. My mother died of rheumatoid arthritis – 25 years later, I was diagnosed with axial spondyloarthritis. I was going down the same route as my mother but, thanks to the new drugs/research, I lead a healthy, pain-free life. My thanks to Arthritis UK."

"I left a gift to Arthritis UK in my Will because it's a small token of my ongoing appreciation of the amazing things that has come, because of other people's generosity, and the knowledge of the scientists. The absolute least I can do. And a true legacy of my dear mum.'

Could you tell us about the type of arthritis you have?

"I started with pain 14 years ago, it took four years to diagnose axial spondyloarthritis, two years with my GP who then referred me to Rheumatology in DRI. A fabulous team who deserve nothing but praise."

How does arthritis impact your life?

In the early years of her diagnosis, Penny greatly struggled with movement and pain and her life was limited by her condition. Now, “research has done an amazing job” and she now walks 13 miles at weekends.

She’s aware she’s one of the lucky ones and is motivated and driven by how things were to keep moving and living a healthy life.

Is there a family history of arthritis?

Mum lived with rheumatoid arthritis. “For me, it’s Mum’s story, it’s not my own”.

Penny sadly remembers her mother living in a lot of pain and at the end of her life was paralysed by her condition, needing full-time care. She spent time in care homes but felt miserable being in a place surrounded by ‘old people’. Penny’s mother was in her 60s when she passed away so was relatively young.

Penny’s memories of her mother’s experience understandably filled her with dread when she received her own diagnosis – she didn’t want to go through what her mother did.

Penny’s daughter also has arthritis in her knees – took three years to diagnose.

If so, can you see the difference in treatments and procedures that are available to you today (that may not have been for your relatives)?

Before, arthritis got ‘brushed under the carpet’ but people like Penny are living proof of the advancements in research and life-changing treatments.

"I remember the Rheumatology Specialist, telling mum that a huge breakthrough had been made, he told her that as long as the joints weren't damaged it could be held at the early stage with good pain relief.  Her utter disappointment when she realised that this wasn't going to help her. But she was so relieved that others wouldn't suffer as she was."

What are your hopes for arthritis research in the future? How do you hope your gift will help? 

"My hopes are that people will no longer have to suffer the excruciating pain arthritis brings. The money goes towards supporting people in pain verbally, emotionally and physically. Also educating clinicians, as I believe people could sometimes be referred to specialist earlier, helping them receive relief much sooner. But also educating the public to understand what is actually available and how request this."

"My gift will continue to support an absolutely amazing cause which moves with the times and shares the good work brought about by the amazing dedication of the scientists."

What would you say to someone considering leaving a gift to Arthritis UK in their Will? How would you encourage them? 

"I would always encourage friends, family or public to leave money in their Will, as I can see/feel in a relatively short period of time, how hard they have worked with great success which has enabled me to live a normal, active life."

"I can see how the devastating, crippling rheumatoid arthritis took a hold of my dear mother and finally ended her life far too young at 67 years of age."