53 yr old woman w/primary LE in both legs, diagnosed 1 yr ago, would like to correspond w/others in similar situation. Very little information and support available. Please write to: Carol McFarland, PO Box 732, Wood Lake, NE 69221.
47 yr old woman w/primary LE, onset 1988. Doctors don't know why. No treatment of any kind currently. I do plan on going for Manual Lymph Drainage. I would like a female netpal about my age. Ideally, am looking for someone who has gone through or is going through the Manual Lymph Drainage or CDP, who knows about tx. e-mail address: Marsha Fliegelman, 27 Van Hise Court, East Brunwick, NJ 08816 e-mail: jamajama4@aol.com
Mother of 4 1/2 year old boy who has primary lymphedema since birth. Born
with pleural effusion of lungs (chylothorax). Lymphedema affects right side:
leg, hand and forearm, and subtle on the right side of his face. Kim
Avanthay. Box 1082, Lac du Bonnet, MB R0E 1A0. email: kimavant@mts.net
We have a young son w/LE since birth. Would like to correspond w/parents or individuals who have had primary LE since birth. Would like to know any information about surgery, manual lymph drainage, etc. What works for you? What does NOT? We NEED to know what is best for our son for the long-term (surgery? other methods?). Please write to: Homer & Mary Schmucker, 45 Walnut St #1, Irwin, PA 15642.
I am a parent of a 28 year old mentally retarded young women who developed primary LE 4 years ago. I would like to communicate with others with similar background and need. Please write to: Lee Perler, 19 Pierce Lane, Madison, CT 06443.
I am a parent of a 16 yr old girl born neurologically impaired. She does not speak and has primary LE in all limbs. Would appreciate any information on how she might feel, can certain activities bother her? etc. Anyone in a similar situation? Eileen Runfola. e-mail: frunfola@aol.com. Or write: 259 Pond Rd., Bohemia, NY 11716.
Parents of a six month old boy w/congenital LE in rt. foot would like to hear from anyone who has dealt with or is dealing with a similar situation. We are contemplating surgery and are especially interested in anyone who has had surgery for their LE. Corinne & Walter Marcus, 419 Walnut St., New Orleans, LA 70118. (504) 861-3219.
Our son Dylan (birth date 9/29/06) has primary congenital lymphedema in his
lower body - both legs, both feet and genitals. His condition is thus far
idiopathic and we have no other afflicted family members. I have been
successful in getting a mandate passed in North Carolina which requires all
insurance policies in this state to cover LE treatment, including
compression garments. Please contact me if you would like help pursuing
legislation in your state, if you'd like to work with me in obtaining a
federal mandate, or if you have a child with LE. Heather Ferguson, 6031
Hanna Ct, Charlotte, NC 28212 (704) 532-8083. Email: hmff@earthlink.net.
I am a 28 yr old female with LE in the rt. leg for four yrs now post chemo & rad therapy as a result of sarcoma removed from the groin area 12 yrs ago. Surgery was followed by hospitalization due to infection caused by an insect bite. Would like a penpal or netpal with similar condition. Diane McElroy, 16215 Sussex St., Detroit MI 48235 or e-mail: drm@kompc.com.
49 yr old woman w/lymphedema in both legs, possibly from hysterectomy surgery several years ago. After 21 years as a school teacher, forced to retire this year because of my legs. Have had MLD and used a pump. Would like to correspond with someone in a similar situation. Sylvia Jefcoat, 6325 Yellowhammer Dr., Pinson AL 35126.
I am a female w/secondary LE of both lower extremities. Would like to correspond w/other patients w/similar situation. I have no e-mail access, but could write or phone. Please write to me: Denise Tullis, 15125 Beckner St., La Puente CA 91744.
I am a 43 yr old female w/secondary LE from waist down. I have had debulking surgery on both legs from hips to ankles, lateral and bilateral. Am in pain and feel alone. Anyone out there? Katherine Sturcken, 933 Fairfield Ave., North Augusta, SC 29841.
My name Patricia Paesch and I am a 69 year old lady with secondary lymphedema of the lower extremities and pelvis for 21 years from invasive gynecologic cancer. I would like to correspond via e-mail with others dealing with similar challenges.
My name is Chuck McGilvray. I am a secondary lymphedema patient, left leg, and would like to network with anyone who is successfully exercising. I am a long-distance runner who uses biking and swimming as alternate exercises. I find it difficult to get any information as to what I can do without causing problems with inflammation of my leg. Most of the Medical advice I get is to slow down, and not try so hard to get back in shape. My e-mail address is runnerchuck@mac.com. I am 73 years old and not ready to throw in the towel, yet. Thanks, Chuck
I am a Breast Cancer survivor with lymphedema of the right arm. E-mail address vpfau65@yahoo.com. My age is 65.
I am a 40-yr-old woman w/LE in left arm/hand that developed after a car accident in 2004. I live in Matthews, NC and would like to correspond with others in a similar situation (LE of upper limb/s). Please contact Lisa at: blessed00@yahoo.com.
I am a 44 yr old woman who had a lumpectomy in 1999 (5 positive nodes out of 9) followed by 9 months chemo, 6 wks radiation. Am now experiencing LE in left (affected) arm. I work in production assembly environment (for 6 yrs). Doctors and others in the my area are not well informed about LE. All they say is continue to work at my usual duties at work (heavy lifting and repetive movement). This goes against what I have read. Should I seek other medical doctors for a second opinion? I do not want to permanently lose the use of this arm. Anyone with feedback or suggestions, I would love to hear from you. Write to Tammy Royal: 3715 River Road, Vanceboro, NC 28586.
62 yr. old woman, 18 year cancer survivor w/secondary LE post-mastectomy, currently in treatment (compression pump, Reid sleeve, MLD) would like to hear from anyone in similar situation. Had a recurrence of breast cancer 3 yrs. ago and developed LE after starting chemotherapy. Please write to: marlene@clanmcleod.com
44 yr old woman 4 yrs post mastectomy seeks correspondence w/users of Reid Sleeve, Armassist sleeve or any other sleeve. Would also like to correspond w/others coping w/severe upper extremity lymphedema. Write to: Marie Tsikopoulou, 4457 Beaconsfield Ave., Montreal, Quebec Canada H4A 2H5.
I am a 69 yr old, 12 yr BC survivor who developed secondary LE soon after treatment (lumpectomy, node dissection and radiation). My recurrent bouts with cellulitis/lymphangitis have settled down. I'm happy to correspond with anyone who needs information or support. Sheilah Musselman: shemuss@juno.com.
I am very anxious to connect with someone who has lymphedema from a mastectomy. I am considering bandaging and would really like to correspond with someone that has been through this therapy. I am 42 years of age and an 8+ year survivor! Please write to: 2190 Kissingen Ave., Bartow, FL 33830.
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