PRIMARY LYMPHEDEMA PATIENTS

 

Sarah Danison, age 10, woke up on December 14, 2004, with swelling in her left ankle and foot. In the past, Sarah was interested in dance and gymnastic. She has played soccer, been active in Girl Scouts and loves to jump on the trampoline. She will begin her CDT therapy soon with the goal of returning to gymnastics.

 

Jonathan Maiden, age 11 months, has been diagnosed with primary lymphedema in both legs, arms, genitals and face. The congenital lymphedema was noted with ultrasound prior to birth.

 

Trinity Maiden, age 5, has primary lymphedema in both legs, arms trunk and head/neck. Because her diagnosis was unexpected, her mother's labor was difficult and delivery required fracturing Trinity's right arm. She tends to walk on her tip toes. Her doctor believes this is due to the use of bandages when she was first learning to walk. Her parents have learned how to perform MLD, apply bandages and help her do her exercises. Trinity is learning how to do MLD on herself. She wears panty hose during the day and Tribute with short stretch bandages at night.

 

Carson Sollenberger, age 2 ½, was born with lymphedema in his right leg, pelvis and genital areas. Carson has completed his CDT therapy and his parents and grandparents continue with his treatment at home. He wears a custom garment during the day and a Reid Sleeve at night.

 

Charles Pat O'Connor was born with congenital lymphedema (Milroy's) in 1952. During the 1960's and 70's he underwent numerous experimental treatments, including three debulking surgeries. Since decongestive therapy was not available until the 1990's (in Atlanta), Pat never had CDT. In l995, he was diagnosed with B cell lymphoma starting in his left leg and in 2000 with lymphoplasmacytic lymphoma from a node in the right leg. In l998, it was also discovered that Pat had what is called Idiopathic Chronic Leukopenia which is suspected to come from the hereditary lymphedema.

 

"Having children with lymphedema has affected our lives tremendously, we have suffered as parents emotionally, physically, and financially. Even through all the stress and feeling so helpless and alone, we have experienced pure love and joy with them as well. Their smiles keep us going another day and we are thankful for that. What we would like to happen is for more doctors to become interested in, and educated in the field of lymphology, so that my children and others are not treated as an experiment, but rather, get the proper care they deserve. I hope, in the near future, there will be a cure for lymphedema - not just for my children, but for the generations to come. All we can do is pray that God gives us the strength to endure one more day."    

                                                                                                                            - Jamie and Norman Maiden, parents of Trinity and Jonathan Maiden



Primary Lymphedema Patients


Clockwise from top: Pat O'Connor, Carson Sollenberger, 
Trinity Maiden, Jonathan Maiden, and Sarah Danison.