Patient story

Victoria Kate LynnVictoria Kate Lynn

by Susan and Bryan Lynn

I hope this message finds you in good health.

Unfortunately, totally unexpectedly and out of the blue, we lost our Darling Daughter Victoria who sufferered from P.H., in November 2003, shortly before her 21st birthday. We are still 'reeling' from the shock.

Her condition was successfully controlled by Uniprost via a Minimed pump.

Torti, as she was known, was a most exuberant, selfless and considerate person, always putting the interest of others in her life as her top priority, and living her life to the full. She managed to live away from home whilst at university, studying a health studies degree, in the hope that she could help others, and she loved going clubbing, dancing and all things musical.

We created a website in her memory, which has so far had over 9,300 hits in 17 months.

In the hope that she might help others, and raise money for research, Torti wrote her autobiography which is a very candid story of a young person's life, and perspective of this terrible disease.

There were over 500 people at her funeral, over half of whom were her friends from all over the country, such was she loved by all who knew her. The last paragraph of the book was read out at her funeral, which follows:

"I always used to think that what happened in the past dictated precisely one’s future. However, I now know that this is not always so. If it was, I would not be writing this today sat in my room at university telling my story. What does predict your future is how you live with the past and if I can overcome the hurdles I have done so far and still have a positive outlook for the future, then so can you!”

Torti's autobiography entitled 'A Breath of Fresh Air' is a glossy paperback which has been published by P.H.A.-U.K as they considered that it would be beneficial and therapeutic to fellow sufferers. Everybody who has read it and commented that whilst moving in parts, it is greatly inspirational.

It is on sale here in the U.K. directly from my wife and myself at a price of £7.00 plus shipping and handling, all proceeds going to P.H.A.- U.K.

If Torti would have lived by any motto, we feel it would have been "If I can...then so can you." ”


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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.