Incidence of Primary Lymphedema versus Secondary

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Incidence of Primary Lymphedema versus Secondary

Postby patoco » Sun Jun 11, 2006 8:59 am

Incidence of Primary Lymphedema versus Secondary

Our Home Page: Lymphedema People

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,

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

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:

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
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