SCLERO.ORG is retiring 4-24-2021. Thank you for the memories! You'll still find us in the Wayback Machine, and we'll carry your stories in our hearts forever.
Patient & Caregiver Stories Main Menu

(English) by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

Aurora: Linear Scleroderma

Cáceres, Spain

Orange Day Lily for Aurora by Sherrill Knaggs, ISN Artist It all began when I was five years old, in 1963. In my city of origin, pediatricians did not know what was happening to me, and when they saw how those white spots turned darker, and how some parts of my body were so dry and irritated, they sent me to Madrid.

After many problems and studies, the only thing my parents found out was that it was not contagious for my brothers, nor hereditary. I took vitamins every day, until I got tired of so many pills.

I grew up and learned how to live with my atrophies. I got married, and had four kids without knowing how serious this was, without even knowing I had an illness.

One day, after being sick for a time, my doctor found out I had a serious case anemia, and at the same time sent me to the dermatologist. He, in turn, sent me to the hospital Salamanca, where I was diagnosed with linear scleroderma, with a short term treatment, since the medication would not allow me to recover from my anemia.

I next began to trip and fall very easily. Doctors saw that I was affected to the point of suffering hemiparesis on my left side. I began to have spasms and was treated by a neurologist. By this time I considered anemia something quite normal in me.

I began to lose weight, until I was 37 kilograms (82 pounds), and after that they discovered I had hypothyroidism. During the tests they also discovered that my stomach was shaped like a cylinder.

In the meantime, my anemia was not getting any better, and neither was the pain, so they checked and discovered a tumor in my colon. I had an emergency operation and as soon as I was better I went through chemotherapy. I went from 37 to 62 kilos (137 pounds). But things did not get better, now I had one more thing to worry about, I had become diabetic.

Five years have gone by since the surgery, and while it has been very hard, I have stopped developing polyps. The oncologist released me last month, but I feel worse with every day that goes by. I am always very tired, and I suffer from pain that will not go away no matter what I do. I am happy that I did not get cancer, but a bit sad because I cannot enjoy it fully, pain and tiredness do not allow me to. Those around me do not see what goes on every day, this makes the situation even harder, because even if I can't, I have to do what is expected of me. They want me to be a perfect mother and wife, and that is too much sometimes.

I think it would be interesting if a rheumatologist could treat me, perhaps he could help me ease the pain. The other symptoms and problems are controlled, each with its own specialist.

I do not know whether all the things that have happened to me are related to my base illness, scleroderma, whether the hemangiomas in my liver, and the nodules in my kidneys, as well as my retina with a cyst can be associated to this. The only thing I know is that the muscular mass of the affected zones is decaying really slowly, at least something good is happening.

I love life, and I am willing to be here a long time, if you help me a little, it would be so much better. I would like to know whether in my city, Cáceres, Spain, there is somebody who suffers from scleroderma. Thank you for your attention.

To Contact the Author

Email: [email protected]
Story edited 08-16-06 JTD
Stor posted 09-26-06 SLE

ISN Senior Artist: Sherrill Knaggs
Story Translator: Alba León
Story Editor: Judith Thompson Devlin
(Español/Spanish) Aurora: Esclerodermia Lineal
(Español/Spanish) Esclerodermia Lineal

Linear 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 Avril: Morphea

SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses. We are a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team. Donations may also be mailed to:

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected]. Disclaimer. Privacy Policy.