Home page: Lymphedema People
The problem and questions begin when you discover that your beautiful new little baby has arms or legs that swell for no apparent reason. You take your baby to the doctors…one after another and all they seem to be able to do is shake their head and say “I don't know!”
What do you turn? What do you do next? How in the world can you get some help? Here is some information that may help.
In addition, the bottom of the page includes a listing of conditions you can be born with that may have lymphedema as a secondary complication.
Swelling is simply defined as the enlargement of an effected body part, generally arm or leg as a result of fluid rentention. It may also effect the skin, organs, hand, fingers, foot and even toes. The fluid collects because the body is not able to eliminate the excess liquids.
It is not uncommon and has been experienced by many many people. Usually, this swelling is temporary and goes away after the underlying condition is healed.
If it effects a specific area i.e. arm or leg it is referred to a localized edema, if it effects the entire over all body it is referred to as generalized edema.
This temporary swelling may be caused by an infection, burn or sunburn, insect bites, an injury to the leg such as a sprain, surgery, or even medications such a hormone drugs, steroids, blood pressure drugs, or may be an allergic reaction in which is it referred to as angioedema. This may also be an part of the inflammatory response your body goes through it trying to protect and heal the leg or arm from the cause of the trauma.
Long term swelling is referred to as edema. This is usually related to specific medical conditions. These conditions may include diabetes, congestive heart failure, blood clot, varicose veins, kidney failure, liver failure or a number of cardio-vascular problems.
In the situation of any permanent leg swelling whether the cause is known or unknown, the diagnoses of lymphedema must be considered
There are several groups of people who experience leg or arm swelling from known causes, but it doesn't go away or unknown causes where the swelling can actually get worse as time goes by.
This group includes those who have had the injuries, infections, insect bites, trauma to the leg, surgeries or reaction to a medication. When this swelling does not go away, and becomes permanent it is called secondary lymphedema.
Another extremely large group that experiences permanent leg or arm swelling are cancer patients, people who are morbidly obese, or those with the condition called lipedema. What causes the swelling to remain permanent is that the lymph system has been so damaged that it can no longer operate normally in removing the body's waste fluid.
This is also referred to as secondary lymphedema.
Group three consists of people who have leg or arm swelling from seemingly unknown reasons. There may be no injury, no cancer, no trauma, but for some reason the leg simply is swollen all the time.
The swelling may start at birth, it may begin at puberty, or may begin in the 3rd, 4th or even 5th decade of life or sometimes later.
This type of leg or arm swelling is called primary lymphedema. It can be caused by a genetic defect, malformation or damage to the lymph system while in the womb or at birth or be part of another birth condition that also effects the lymph system.
This is an extremely serious medical condition that must be diagnosed early, and treated quickly so as to avoid painful, debilitating and even life threatening complications. Treatment should NOT include the use of diuretics.
If you are an at risk person for arm lymphedema or leg lymphedema there are early warning signs you should be aware of. If you experience any or several of these symptoms, you should immediately make your physician aware of them.
1.) Unexplained aching, hurting or pain in the arm
2.) Experiencing “fleeting lymphedema.” This is where the limb may swell, even slightly, then return to normal. This may be a precursor to full blown arm or leg lymphedema.
3.) Localized swelling of any area. Sometimes lymphedema may start as swelling in one area, for example the hand, or between the elbow and hand. This is an indication of early lymphatic malfunction.
5.) You may experience a feeling of tightness, heaviness or weakness of the arm.
The preferred treatment today is decongestive therapy. The forms of therapy are complete decongestive therapy (CDT) or manual decongestive therapy (MDT), there are variances, but most involve these two type of treatment.
It is a form of massage therapy where the leg is very gently massaged to actually move the fluid out of the leg and into an area where the lymph system still functions normally.
With these massage treatments, swelling is reduced and then the patient is fitted with a pre-measured custom pressure garment to keep the swelling down and/or is taught to use compression wraps to maintain the leg size.
4. Loss of Function due to the swelling and limb changes.
8. Possible amputation of the limb.
10. Skin complications such as splitting, plaques, susceptibility to fungus and bacterial infections.
11. Chronic localized inflammations.
No, at the present time there is no cure for lymphedema. But it can be treated and managed and most of the complications can be avoided. Life with lymphedema can still be active and full, with proper treatment, patient education, and patient life style adaptation.
Leg swelling in a newborn. Sept 2005
For extensive information on lymphedema, please visit our home page:
For more extensive info on children's lymphedema:
© Copyright 2005 by Pat O'Connor and Lymphedema People
The time has come for families, parents, caregivers to have a support group of their own. Support group for parents, families and caregivers of chilren with lymphedema. Sharing information on coping, diagnosis, treatment and prognosis. Sponsored by Lymphedema People. http://health.groups.yahoo.com/group/childrenwithlymphedema/ Subscribe: firstname.lastname@example.org
Welcome to all our family and friends. Patients, families, caregivers, therapists, nurses, doctors, anyone with a concern for and interest in lymphedema is most welcome!!!
Come, be a part of the largest online lymphedema network in the world.
Aagenaes Syndrome; Aarskog Syndrome; Alpha Galactosidase B Deficiency; Atrial Septal Defect; Avasthey Roy syndrome; Campomelia Cumming Syndrome; Cholestasis syndrome; Congenital Disorder of Glycosylation Type 1B; Congenital Recessive; Distichiasis; Dysplasia Anhidrotic Immunodeficiency Oledaid; Ectodermal Dysplasia Hypohidrotic Immune Deficiency; Fabry's Disease; Figueroa Syndrome; Hennekam Lymphangiectasia; Intestinal LymphangiectasiaHypoparathyroidism; Hypotrichosis Lymphedema; Idiopathic Hydrops Fetalis;Jekens Syndrome; Kasabach Merritt Syndrome; KlinefelterSyndrome; Lissencephaly Syndrome; Maffuccis Syndrome; Melkersson Rosenthal Syndrome; Micropehaly Chorioretinopathy Syndrome; Nevo Syndrome; Noonan Syndrome; Osteopetrosis Ectodermal; Pulmonary Lymphagiectasia; Peho Syndrome; Prolidase Deficiency; Ptosis Syndrome; Pulmonary Cystic Lymphangiectasis; Sharp Aagenaes Syndrome; Stewart Treves Syndrome; Swyer Syndrome; Trisomy 10; Trisomy 13; Trisomy 18; Trisomy 21; Trisomy 22; Trisomy Disorders; Turner Syndrome; Von Recklinghausen Neurofibromatosis; Yellow Nail Syndrome; Lipedema; Omphalocele III; Reflex Sympathetic Dystrophy (RSD); German Syndrome
Syndromes Associated with Lymphatic Dysplasia gives a brief overview of most of these conditions. For further information, please consult the individual pages linked above.
Castleman's Disease; Cystic hygroma; KlippelTrenaunay Weber; Lipedema; Lymphangiomatosis; Lymphoceles; Lymphadenopathy; Lymphangiomas; Lymphatic Malformations; Prader-Willi Syndrome; Amniotic Band Syndrome; Hidradenitis Suppurativa; Crohn's Disease, Panniculitis; Lymphangioleiomyomatosis (LAM); Omphalocele III; Phelan-McDermid Syndrome - 22q13 deletion; Lipoma and LipomasLymphadenitis