Our Member Stories

Hope Comes in a Capsule

Heather KirkwoodHeather Kirkwood’s mother always suspected her children had a bleeding disorder. During their childhood Heather and her younger brother were tested four different times for suspected bleeding disorders, but every time the tests came back negative. At 21, after two years of fighting what had been diagnosed as Crohn’s disease, Heather was severely bleeding from her large bowel. Doctors felt an ileostomy was the only solution, but were concerned about the bleeding. It was then that a hematologist suggested she might have Hermansky-Pudlak Syndrome.
Read more

Two of a Kind

candice_and_crystal_sipeIdentical twins Hema and Rama arrived in Phoenix, AZ. August 3rd, 1981 from Hyderabad India.  They had just turned a year old August 1st.  Hema weighed 12 pounds, Rama 13 pounds, very small for a one year old child.
Read more

Meeting the Mother of My Lungs

Nancy LeeNancy Lee has been a board member of the HPS Network for many years. In 2011, she received a lung transplant.
Read more