Family Hosts World #LGDAwareness Event

The image is of an article that appeared in the local newspaper where the van der Velden family lives in The Netherlands. The family is hosting an event in conjunction with the first World #LGDAwareness Day on May 26, 2017. Below the image is a translation of the text.

 

Family from Dordrecht asks for awareness of rare disease

Fifteen-year-old teenager Ella from Dordrecht, Netherland, has the very rare and life-threatening disease, lymphangiomatosis. Two-hundred and thirty people worldwide are known with this disease. To raise awareness, share experiences and support patients and family, Ella and her family are organizing an event on Friday May 26th from 1 – 6pm at Hallincqlaan 7.

“This disease causes benign tumors in the body that pushes away organs. But it can also occur in the bones. The bone looks like a cheese with holes,” explains Ange van der Velden, Ella’s mom. May 26 is World LGDA Awareness Day. LGDA stands for Lymphangiomatosis and Gorham’s Disease Alliance. An alliance with an official awareness day for the first time this year. “With this date we honor LGDA founder Jana Sheets who was born on this day and unfortunately passed away due to lymphangiomatosis,” tells Ange.

After the diagnosis of her daughter, Ange started to look into the disease and founded the LGD Alliance Nederland. This alliance is active for two years now and works together with other alliances to join forces. The Dutch alliance is part of the European one with strong goals: improve the quality of life of and medical care for patients and stimulating and financing research. Also connecting patients and their families and informing the wider public and even medical specialists of the disease.

“It is ‘super rare,’” Ange says. “We have found 230 people with lymphangiomatosis and/or Gorham’s disease. New patients are known monthly, but unfortunately we lose patients as well. Since a few years an experimental drug is used and useful to a large part of the patients, making the disease stop growing, but side effects are severe.

“We try to raise as much money as we can, but,” Ange realises, “It’s just a drop in the ocean, but all drops count. And you want to be able to do something and contribute.”

The family is very willing to share their experience.


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