Ellie's story
I am Ellie, I have IPH (Idiopathic Pumlonary Hemosiderosis). IPH is the unknown bleeding of the lungs. When I have a flare up, I cough up blood and find it difficult to breathe.I was diagnosed when I was 12. Growing up I had chest infections, pneumonia, coughing up blood and aneamia. After spending 3 weeks at Starship and having a lung biopsy my Doctors gave me my diagnosis.I take prednisone daily as a preventative to stop any bleeds. When I have a flare up or bleed, I am treated in hospital with oxygen, prednisone, antibiotics and tranexmic acid to stop the bleeding. I have had to have blood tranfusions due to blood loss.IPH does not define me and it is not who I am. I am Ellie, I am laughter, I am family, I am friendship and I am Netball. I love netball and on occasions have had day leave from hospital so I can play (much to my parents dislike).I also have a brother who has a one in a million rare disease. The odds of having two children with two different rare diseases is two in two million. The odds of winning lotto is less.
My parents are still waiting for their top lotto win!