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Karen C: Daughter of Diffuse Scleroderma Patient


Snowflake Plant, for Karen by Sherrill Knaggs, ISN Artist Hello, my name is Karen. I am thirty years old and I live in Chile. My father is Juan, he's fifty-two and suffers from diffuse scleroderma.

It was a real shock for everyone in my family when the doctor explained to us what the illness was about. This was almost two months ago. It has been really hard for me and my family, especially because we are very close and we love our father dearly. He means the world to us three sisters, to my poor mother and to his treasures, his three grandchildren. We obviously don't want our father to die, but unfortunately that day is getting closer, especially because he has had extensive damage to several organs: dilated cardiomyopathy, heart failure, pulmonary fibrosis, he is dependent on oxygen. He also has esophageal and intestinal problems, and adrenal failure.

As you can see we have gone through a lot with this. He lives at the hospital, but it really breaks my heart that he has a very strong will to live. He does everything he can, and the worst is I haven't told anyone how sick he is and that he will not be with us much longer, I am the only one who knows this. It is very stressful and sad having to hide this, but I can't tell anyone, especially not my father, since he thinks he's going to make a full recovery. You don't know how much it hurts to see my father like this.

I am writing to ask you to contact me, to help me understand and live with this, to give me strength, words of encouragement, which is what I need the most right now.

Only God knows, but I am not strong and my soul aches. Also, here in Chile, the illness isn't common, at the most one or two cases every ten years, so I would appreciate it if you could help me and guide me to new treatments.

You don't know how much finding you and knowing that my dad isn't the only one has helped me. I feel immensely grateful to you. I am waiting for your answers, whoever wants to write is more than welcome.

~ Update 03-12-07 ~

Hello friends, it's me, Karen, and this is my second story. In the first one, that you can also see here, I told you about the pain I felt when my father was diagnosed with this illness.

But now I am writing to tell you this pain has grown even more, since my beloved father left this world. He could not fight the illness and he died on July 13, 2006. I am really really sad, with a pain that I cannot even begin to tell, and my soul is in pain. My life is not the same, something is missing, I am completely empty without my beloved father.

He was doing fine, taking immunosuppresors, but his defenses fell so low that they had to stop the treatment for a week. His doctor left on vacation and left him in the care of other doctors, they had him off the drugs for about a month, and the illness advanced so much that he could not get over it and died.

I love you all, and I want you to know that you were a great support to me; because of my last story a lot of people wrote to me, and I became friends with a lot of them. May God bless you. Do not give up, fight for life, it is so beautiful. Love your parents, your family, love yourselves, one never knows when it is time to say goodbye.

To Contact the Author

Karen C.
Email: [email protected]
Story prepared 01-06-06 JTD
Story translated to English 01-31-06 AL
Story posted 02-03-06 SLE
Story update edited 03-12-07 JTD
Story update posted 04-07-07 SLE

ISN Senior Artist: Sherrill Knaggs
Story Translator: Alba León
Story Prep: Judith Devlin
(Español) Karen C: Hija de Paciente con Esclerodermia Difusa

(Español) Acerca de Esclerodermia
Bowel Involvement
Caregiver Stories
Diffuse Scleroderma
Esophageal Involvement
Heart Involvement
Pulmonary Fibrosis
Survivor Stories
What is Scleroderma?

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Translator and Editor: Alba León

Alba LeonAlba León is the ISN Translator for this page. She is studying international relations in Mexico City.

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

Go to Karen G: Spouse of Scleroderma Patient

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