My sister Lisa passed from vascular EDS on June 9, 2001. She was 20. She had been diagnosed at 15 after her lung collapsed and a biopsy of the tissue was taken in the hospital. She lived the last five years knowing her life expectancy was short, that she would be lucky to live to 40. She lived those five years doing what every teenager loves to do: She went to parties, stayed out late, and had fun. She didn’t talk about her EDS, but we knew the good days from the bad. She lived life and I’m so glad she didn’t let her diagnosis disturb her will to live! She graduated high school, went on to junior college, and got accepted into UC Berkeley as a psychology major; she passed a few months before attending her dream college. She’s my angel and this June will be the 20th anniversary of her passing. I miss her every day! God bless those who have lost their lives to this rare syndrome, and I pray for more research; we need a way to stop this gene from passing on!
(Amy Arriaga)
