Living with this disease

A daily learning experience.

Living with a rare disease is a daily learning experience for patients and families. You have to deal with doctors, specialists, nurses, insurance companies, hospitals, pharmacies, transport, school, work, friends, neighbours and so on. And then we don’t even mention the pain, grief, fear and anger you are dealing with as well.

This disease is hard to understand, so your family, friends and others will have a hard time understanding it too.

How well people can function and how long they survive with lymphangiomatosis or Gorham’s disease varies. It depends on how severely the disease affects each person’s body. Mild disease may remain stable for many years, while severe cases involving the craniofacial and/or thoracic areas may be fatal. Lymphangiomatosis and Gorham’s disease are most serious for those whose lungs are affected. Some patients have survived into adulthood.

There are many articles, blogs and so on about dealing with an incurable, life-threatening and/or rare disease. Not all of them will apply to you or your demands, but it may help you. We will post some of them here.

When a sibling is seriously ill

Caring for a seriously ill child

Dealing with an incurable disease

Life-threatening illness: what to tell family and friends

9 things never to say to friends battling illness

Everything doesn’t happen for a reason