Share your story

Every patient, every family has a story to tell. No two are alike.

And by sharing our stories, we help those who are new to our patient community as well as those who are veterans of this battle. You don’t have to be a professional writer to tell your story. Every story about our “Warriors” is written by the patient or a member of their family—usually a parent. These stories help to raise awareness about these diseases and give physicians an insider’s viewpoint of what the journey is like for patients and their families. Each and every one serves to help members of this community.

The LGDA is seeking stories of those who are living with lymphangiomatosis or Gorham’s disease and those who have passed away from these diseases, for publication on our website, in our newsletter, Channels, in other LGDA communications, and in the media to help educate the public about these diseases and the impact they have on individuals and families.

Submission guidelines

You must be 18 years or older to submit a story. Patients younger than 18 may write their own story, and those between 12 and 18 are encouraged to do so, but his/her parent or guardian must submit it.

Include the full name, date of birth, address, phone and email of the patient and the writer (if other than the patient) and the person submitting the story (if other than the writer), with your submission. This information will not be published, but we need it in order to contact you.

Include a close-up photo of the patient to be published with the story. This does not have to be a recent photo. You may also include 2 or 3 additional photos. All photos should be at least 250mp X 350mp.

Only first names and age at diagnosis of living patients are published. For those submitting the story of a loved one who passed away from one of these diseases, the choice to publish the full name and dates of birth and death is yours.

You do not have to write your story from diagnosis to present. You may choose to write about a particular event or period of time. You also may submit poetry you have written about your experience, with or without a story.

Write clearly and concisely for a general audience.

Email your story as an attachment in .DOC format along with your photos to patient@lgdalliance-europe.org.