What is LM? It is a collection of lymphatic fluid filled cyst and channels. It is believed that sometime in the pregnancy, the lymphatic system does not connect correctly causing this rare disease.
How common is LM? It is believed to affect 1 in 6,000. It affects both sexes and all races. LM patients live all over the world. However, the LLO registry will help track the incidence and prevalence more closely. It will also allow us to track their outcomes years down the road.
How does a LM child look? LM can occur any where in the body. But for 70% of these children, it affects their tongue, floor of mouth, and airway. LM fluid is slowly absorbed by the body causing facial swelling and thickening of the tongue. Many present with a “beard” like chin. Often LM causes the jaw bone to over grow causing obvious facial deformities. And because the cyst and spaces can swell many children require a tracheostomy to secure their airway.
How does LM affect the family unit? Birth is to be a wonderful experience. When handed a diagnosis like LM and seeing child that looks different…the experience of birth is pushed back and a new experience begins. Parents deal with adults and children making fun of their child. Parents learn new medical terms and become medically experienced themselves. Parents are often burdened with the financial toll. And if the child requires a higher level of care due to a tracheostomy or feeding tube, parents and siblings deal with private duty nurses in their home caring for their child. LM parents strive hard to make life as “normal” as possible for the siblings. But “normal” is a relative word because “normal” to a LM family is far from the average person’s definition.
How is LM diagnosed? Many times LM is identified on a routine ultrasounds during pregnancy. Most children are diagnosed before 2 years of age by a CT scan or MRI.
What is the treatment for LM? Years ago, there were over 30 different theories on how to treat LM… meaning there was no good treatment. Treatment today is getting better but has a very long way to go. Often when a doctor runs into a rare disease like LM, they fix the symptoms to the best of their ability. Currently, LM can be treated with surgery, sclerosing agents, lasers, radio frequency and cancer type drugs.
These children go through several surgeries and treatments in their lifetime. The emotional and physical strain on the children alone tends to be quite difficult. It is highly recommended that these children have professional help to deal with the fact they look different, speak different, and the amount of time spent in the hospital/doctor offices.
What is LLO doing to help the LM children and families? By supplying a patient registry, researchers/physicians will have access to LM patients easier and faster for new clinical trials or research. LLO is committed to funding research solely dedicated to LM’s cure, treatment, and research. LLO is also driving the medical world to develop protocols and “best practice” for better outcomes. LLO is fostering “Centers of Excellence” throughout theU.S. to also give better outcomes.
What can I do to help LM children around the world?
- Donate money. Every dollar counts. No donation is too little or too big!!!
- Donate your time. Host a special event – bake sale, house party, etc. Help at an event! And for the athletes, join TEAM LM. By writing letters to your friends, family, and co-workers telling them about LM and your goal to raise money for the cause only helps LLO get the word out – raising awareness!!!
- Donate in-kind services. Non-profits like LLO need printed material, business supplies, items for fund-raising events, promotional items, and event PSA/media. By saving LLO money on these items, we are able to give more to research.
- Spread the word!!! Do you know anyone who can do any of the above? Tell them about LLO and our mission! Many times, people are more likely to donate to an organization if they’ve gotten a recommendation from someone they know. So put in a good word for us and tell your friends, family and business colleagues to visit our web site at www.liamsland.org or contact us at email@example.com