It takes a village to save a life

When Gina was diagnosed with a chronic auto-immune disease, her life was turned upside-down. But with the love of her friends and family and the support of her small-town community, Gina found the strength to carry on.

30 May 2023

Like most people, Gina had never heard of chronic inflammatory demyelinating polyneuropathy (CIDP). A rare autoimmune disorder that can affect people at any age, CIDP attacks the body’s nervous system, damaging the protective layer of fat that surrounds nerve fibres and reducing their ability to send signals, which can lead to weakness or even paralysis.

For Gina, the first sign was a tingling sensation in her feet, but over time she began to find it difficult to walk. Eventually, she lost all mobility in her legs and was bound to a wheelchair, but she wasn’t about to give up. While being treated in hospital, a psychologist visited her. During their chat, she gave Gina a piece of advice that stuck with her, ‘You have to use it or you’ll lose it’. It was such a simple thought, but for Gina it came to define her entire approach to living with CDIP, ‘Regardless of how difficult things get, I knew I needed to keep pushing, keep trying, keep using my body so I don’t lose it.’

Regular exercise became an essential part of Gina’s recovery, but it wasn’t the only tool she had in her fight against CDIP. A treatment known as intravenous immunoglobulin (IVig) could provide Gina’s body with the antibodies it needed to help block the inflammatory process that was damaging her nerve fibres – and that’s where blood donors could help.

IVig is one of over 50 medications made from the plasma collected during a donation. Antibodies found within the plasma are concentrated into a serum which can be delivered intravenously to a recipient. For Gina, it takes approximately 14 plasma donations to create a 5-week supply of IVig. At present, there is no cure for CIDP so Gina will continue to rely on donated plasma for the rest of her life.

Gina’s sister Emma recognised how important blood donations were for her sister’s health. Not one to sit by and do nothing, Emma proposed they set up a Lifeblood Team to support Gina and the countless others who rely on plasma donations. After settling on the name ‘Walk with me and CIDP’ they began recruiting and were quickly overwhelmed. Their first Facebook post led to 25 members, and what started with friends and family quickly spread to old colleagues, in-laws, parents from Gina’s school, members from her church – even her old teacher signed up! The entire town came out to support Gina and provide the life-giving plasma she needs to keep pushing herself to use her body to the best of her ability and live her life the way she wants to.

Gina has always been an active person. Before she was diagnosed with CIDP she loved going for a jog with her local Parkrun group and she wasn’t about to turn her back on something she loved. So, while she was still coming to terms with the reality of her new life, the words of her psychologist stuck in her mind, ‘You’ve got to use it, or you’ll lose it’. Determined to get back on her feet, Gina set herself a long-term goal to return to Parkrun and finish the course in under one hour. While it wasn’t easy, she didn’t give up, and two years after her diagnosis she achieved that goal, completing the course in 55 minutes. The whole town shared in the celebration with the local paper even giving Gina a write-up to say congratulations.

If you’re inspired by Gina’s story or know someone who relies on blood donation for their health, setting up a Lifeblood Team is a great way to show your support. Besides, the only thing better than saving lives, is saving lives with your mates!