On 15th June I will be taking part in Race to the King, a 103km ultramarathon.

‘Why would she do that voluntarily!?’ I hear you exclaim. I love running and I’m grateful for all that my body does for me. This is a personal challenge combined with a sport that brings me joy and one that I think is so symbolic of life; nothing is guaranteed and having the courage to start is often the biggest achievement of all.

More importantly I also get the chance to support a cause close to my heart and do my small bit to help raise awareness of rare lymphatic diseases (complex lymphatic anomalies.) There are 4 types of complex lymphatic anomalies which are rare, progressive disorders of the lymphatic system.

Your lymphatic system is part of your immune system. It helps your body fight off diseases. It exists in almost every part of the body and is made up of a network of lymphatic vessels, tissues, glands and organs. Disorders can therefore occur anywhere but the most common locations are in the bones and lungs. It typically presents by age 20; children with complex lymphatic anomalies develop fluid-filled cysts called lymphangiomas in their lymphatic system. These noncancerous cysts can grow into and damage bones, tissue and organs.

I support the LGD Alliance (Lymphangiomatosis and Gorham’s Disease Alliance) whose mission is to provide support, education and hope to patients and families affected by rare and complex lymphatic disease. In June, I will be running in memory of my twin brother.

In Europe and the US, LGD Alliance fund research into causes and treatment of these lymphatic disorders, to advance knowledge and provide a support network to individuals and families. There are so few patients here in the UK that research is a challenge. Only 252 patients are registered worldwide with Complex Lymphatic Anomalies.

Financial support allows LGD Alliance partners to carry out worldwide research and offer hope for a cure. If you are able, any contribution will help continue their work and would mean the world to me.

Thankyou.

Char x