Can You Say Lymphangiomatosis?

Then just say LYMF...

The story behind the acronym LYMF…

In January 2005, when the Lymphangiomatosis Foundation/LYMF Foundation became a full fledged bonified foundation the board members discussed methods to make the disease easier to pronounce as well as to differentiate it from another very rare disease that is frequently confused with LYMF.

The other disease is spelled Lymphangioleiomyomatosis with the use of the acronym LAM.  LAM is a very rare lymphatic disease that primarily involves cysts in the lungs and is primarily seen in women in their child-bearing years.

The board came up with the acronym LYMF and thus – changed the name of the foundation to the LYMF Foundation as well (to make it easier for people to pronounce as well as to help promote the use of LYMF as LAM has become accepted for the other disease.

In 2007, the LYMF Foundation was represented at the annual International LAM conference in order to help promote and inspire LAM researchers to possibly include LYMF patients in some of their research (to help demonstrate differences between the two diseases).

In order to make researchers aware of the second disease, the LYMF Foundation distributed flyers that were entitled LYMF Not LAM…  The flyer had information to help researchers become aware of the disease that has yet to be researched and the LYMF Foundation’s desire to promote research for Lymphangiomatosis/Gorhams Disease.

Gorham’s disease is also called “diappearing bone” disease.

The LYMF Foundation has had 75 patients contact us since January 2005 when we first lauched our website.  We have many patients who state their diagnosis is LYMF without the Gorham’s – involving either a single organ or disseminated (meaning throughout their body involving multiple organs and soft tissues) – but no boney involvement.

A smaller number do have the Gorham’s presentation that includes either isolated boney involvement or a combination of the LYMF that has invaded many areas of their body as well as the bones.