Is there anything more challenging to the human spirit than the battle to regain one’s health; to remain hopeful and “soldier on” knowing there is no cure? Every day hundreds of individuals and their families and friends around the world face this reality with determination and humor; hope and faith in the face of fear and anxiety; and pain and uncertainty. There are days when the humor and hope do not win out over the rest. Their private battles often are made even more difficult by the invisible nature of these diseases. But there is hope to be found, and here in these pages members of this community share their experiences in order to help others reaching for the cure.

The stories of the fallen warriors are the inspirational stories of pioneers. For it was they who sought out and consented to experimental treatments that did not cure, but from which lessons were learned; they who inspired physicians to think creatively in order to enhance both the quality and quantity of their lives; they who donated tissue for further research and demanded autopsies be performed in order that science might learn and other patients benefit. These contributions to science coupled with their hope to be well and determination to help others are their legacies.

These stories will touch your heart, conveying with transparency and sincerity the challenges of living with Gorham’s disease and lymphangiomatosis. Written by patients and family members; caregivers and friends; and those who have lost loved ones, they offer the heart-felt perspective of those whose lives have been forever altered by these two diseases.

They are here to offer hope, support, and encouragement to those affected and to educate and open the eyes of the world.

These pages are dedicated to all of the people around the world who have been affected by lymphangiomatosis and Gorham’s disease.



Reaching for the Cure


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