Elation to devastation

By Sue, Pulmonary capillary hemangiomatosis, United Kingdom, January 5, 2018


The photo is of my Daughter Jennifer Dietschmann who was 19 - (10 days from her 20th birthday ).

Jeni was well happy clever and incredibly sassy .

To all intensive purposes Jen as she liked to be called was healthy and well and had an 11 week old baby.

on the morning of the 1st February 201; her then fiancé and myself couldn't get hold of her so went to her house where we sadly found her - she was already gone and had been dead possibly 6/7 hours with her screaming baby next to her.

This was and will always be the most devastating experience of my life and although in just other 3 weeks happened seven years ago - feels like yesterday yet an eternity.

Jen had never been ill and we had no idea what had killed her . The post mortem that she had to have showed nothing and after 11 long weeks I received a call from the coroner saying he had finally got an answer for us.

He said Jeni had died from a diffuse pulmonary heamorage caused by PCH - although I am a nurse I had never heard of this and later found how rare this is - less than one in a million.

i stilll cannot believe she is gone or that she had such a horrible disease and wish there was more research - I raise awareness as much as I can- my friend ran the London Marathon , I have written a book and paint to raise funds.

Raising awareness is so important 

I only wish this disease could be eradicated , it's hard not knowing why and hope that no one else has to suffer the pain of such a sudden death.


Share this

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.

Share your story

(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.