Incidence of Primary Lymphedema Versus Secondary

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Ever wonder what the incident rate of primary lymphedema is versus secondary? If we believe what is commonly posted on lymphedema articles, the number of those with secondary far outnumbers those of us with primary.

But does it?

We typically think of primary lymphedema in terms of the three most commonly identified types.

Milroy's Syndrome - which begins at birth

Lymphedema praecox - which typically begins at or around puberty

Lymphedema tarda - which begins somewhere around middle age

But, are these the only forms of primary lymphedma?

On our sponsor site, Lymphedema People,

http://www.lymphedemapeople.com

We have articles covering more then 30 medical conditions in which perople are born with malformed or dysfunctional lymphatic systems with resultant lymphedema.

Some of these conditions include Turner Syndrome, Crohn's disease, Noonan Syndrome, and Klippel Trenaunay Weber Syndrome (port-wine stain) also there are even arthritic conditions that involve edema/lymphedema.

One of the world's foremost authorities and doctor's on lymphedema, Dr. Peter Mortimer of St. George's Health Trust in the UK states flatly "In Britain our experience is that non cancer lymphedemas out-number cancer-related lymphedemas 3 to 1"

For an excellent article and interview with him, please see:

Lymphovenous Canada: Cutting edge developments in lymphedema treatment and research British expert Dr. Peter Mortimer speaks out

http://www.lymphovenous-canada.ca/mortimer.htm

He goes on to say, "I was part of a team of researchers in Britain who published a study in the October 2003 issue of the Quarterly Journal of Medicine: "Lymphoedema: an underestimated health problem" where we looked at the population of South West London of over 600,000 people. What we found is that in people over 65 years of age, 1 in 200 had chronic lymphedema. 29% of the people we looked at had had an acute infection (cellulitis) in the affected area, with 27% of those being admitted for intravenous antibiotics."

*****Dr. Mortimer is Professor of Dermatological Medicine, Dept. of Cardiac and Vascular Sciences, St. George's Hospital Medical School, London, UK and the Royal Marsden Hospital, London, UK. For more information you can reach Dr. Mortimer at: pmorti...@sghms.ac.uk.*****

The study and understanding of primary lymphedema, and its cause is still in its infancy.

Clearly, if Dr. Mortimer is correct the number of hidden, undiagnosed or misdiagnosed and untreated primary lymphedema case is staggering.

I also can't help but wonder how many people out there have unexplained arm or leg swelling that have simply been lost to statistics because they have just given up and suffer in silence...or how many have been degraded sufficiently by simply being told (by the medical world) the swelling is their fault and have thus withdrawn and stopped seeking help.