Help Joanne get mobile again, with Milroy Disease, only 200 cases globally.

Joanne has been diagnosed with a rare condition called Milroy's disease, there are only 200 recorded cases in the world and there are no surgery options. It's simply a live with it and manage it diagnosis.

Milroy disease is a condition that affects the normal function of the lymphatic system. The lymphatic system produces and transports fluids and immune cells throughout the body. Impaired transport with accumulation of lymph fluid can cause swelling (lymphedema ).

She desperately needs a special Pants Pump (like a giant high-tech sleeping bag) as her lymphatic system is unable to drain the fluid in her body, causing her legs, arms and waist to swell and retain water. She drinks over 2L of water a day but needs this pump to help move fluid around. On one leg, the fluid literally seeps out of her skin, incredibly uncomfortable and unpleasant.

The pump is like a massage, that helps moves the fluid which doesn't naturally pump up her legs causing swelling. Joanne needs the 16 chamber pants system. Sequential Intermittent Pnuematic Compression (SIPC) therapy is the process of applying external pressure to the limbs to promote the circulation of blood and lymphatic fluid from the extremities of the body. It is a very expensive system but will help her get more mobility, and one income its not possible.

Joanne has to wear chamber stockings 24/7 to help control swelling in legs, and at $600 a pair they are too expensive for her to afford multiple pairs making keeping them clean very difficult (particularly as fluid seeps out of her skin). Regardless these aren't an effective way to manage Joanne's symptoms.

At present the swelling is so bad that she is no longer able to do the things she loves. Joanne is a seamstress and cannot sew as she must keep her legs elevated so needs to stay on an armchair with legs up or lie on the bed for most of the day.

As you can imagine, this is a depressing diagnosis, but Joanne keep positive and grins and bears it. We'd love to rally behind her to support her financially so she can buy these pumps and stockings to have less pain and discomfort.

Thank you for your support!