About Lymphangiomatosis

Lymphangiomatosis (LYMF) - is frequently confused with Lymphangioleiomyomatosis (LAM) is a little known disease that strikes infants and outwardly appearing healthy children and adults and does not discriminate against genders. It is not known how many people have LYMF, and as it is not understood by the majority of the medical community - and is certainly misdiagnosed as other diseases.

The goal of the LYMF Foundation is to become the global "home" for patients diagnosed with LYMF, the physicians treating those patients, and researchers and scientists interested in learning more about this disease, how it affects different patients, and find effective treatments and potential cures for LYMF.

LYMF does not affect all patients equally. What we have learned over the past 5 years is that there are patients who are diganosed as children and live to adulthood with varying degrees of symptoms and limitations. The greatest concerns are for the frequently fatal results that occur in infants, toddlers, adolescents, and very young adults. The most urgent need is for the acceleration of research to find a treatment and hopefully a cure for those who are losing their battle with this horrible disease.

The percentage of patients who die from LYMF is unknown - but as the stories of children who suffer and succumb to the disease before they have any chance of growing up should tell the scientific community that it is time to step up and put their heads together and work together to save them. Too many questions remain unanswered. As each day goes and each young person loses their life before their time - the cause becomes even more urgent...