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

Papa V: Lupus, Antiphospholipid Syndrome, Myasthenia Gravis, and Scleroderma

Although I was only six years old, my doctor asked me if I smoked. Of course not!

Tadpoles by Sherrill Knaggs, ISN Artist My story starts as a six-year-old boy in the late 1950s. My asthma was ongoing and terrible since I was three years old. Our family doctor came over all the time with shots for me. I was given a scratch test for allergies and was allergic to everything they tested me for.

That winter, my hands started to turn paper white and the pain was terrible. I could not run or make snow balls. I thought life was terrible and I guess it was. As time went on my hands got worse not only did the cold cause it but stress did also. Although I was only six years old, my doctor asked me if I smoked. Of course not!

My mom was going downhill at the same time. She was hypothyroid and was having a nervous breakdown. She left us when I was eight years old and things got worse. Little did I know she was suffering from an autoimmune disease also like her mom who had rheumatoid arthritis (RA).

My arms and legs now had small bumps on them so I was to embarrassed to go swimming. At the same time my hands started to get wounds that did not heal. They would ooze with white stuff and the skin got hard.This prevented me from playing baseball, which was the only sport I could play without running that far, since I could not throw the ball.

When I went through puberty my white hands mostly went away, along with my lung and allergy problems. My father died just before my seventeenth birthday. He was my only pal, my hero. He had suffered a stroke years before. He developed red blood vessels all over his face, so I now wonder if he might have had an autoimmune disease, also.

At seventeen I joined the Army. I always wanted to be a soldier, maybe because it was the closest thing there was to having a family. I loved it even though Vietnam was going on. I did great during basic and advanced training. I had friends and a family again. Then it was winter and I was out in the field and got a small cut on a finger and it would not heal. I also had pain and my fingers were white again. I was taken to the medic and then to the hospital. I was there a week and almost lost the finger. The head rheumatologist came in to see me and took pictures of my hands for his class. (Wow, the thing that had caused me so much pain was now becoming famous.) But that was the end of my military career and my new family.

So at age eighteen, I had an Honorable discharge, and as I got older I felt lucky that I did not see war. After that it did not bother me much and then not at all. All those years I really did not know what I had and did not really care as long as the pain was not there anymore.

About thirty years passed, and then—BAM !—I got a heart blockage, stroke, liver biopsy due to elevated enzymes, skin rash, high blood pressure, very high ANA and other positive tests results and I got my painful friend back but now with a name for it: Raynaud's ! I finally got diagnosed with Systemic Lupus Erythematosus (SLE), fibromyalgia, then Antiphospholipid Syndrome (APS) was added along with myasthenia gravis (MG). And now after more symptoms, I also have scleroderma.

I do not know if all that happened to me at six years old was connected to all this, but looking back on it now, I think it was.

By the way, I have four children, three grandchildren, and the best wife a man could ever dream of. Miracles do happen. No sickness or pain can make me sad now. Everyday I wake up, I thank God for my true blessings.

To Contact the Author

Papa V
Email: Withheld by request
Story edited 09-22-04
Story posted 9-24-04 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Antiphospholipid Syndrome
Cardiac (Heart) Involvement
High Blood Pressure
Liver Involvement
Myasthenia Gravis
Raynaud's Stories
Rheumatoid Arthritis (RA)
Systemic Lupus Erythematosus

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 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 Pat: CREST Scleroderma
Most Recent Donors

Winn Schillberg
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!

In Loving Memory

Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.


SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA

Email [email protected] to request our Welcome email, or to report bad links or to update this page content.

TOLL FREE HOTLINE 800-564-7099
Free to U.S. and Canadian Callers. Ask for our Free Info Packet by mail or email!
Scleroderma, Pulmonary Arterial Hypertension, and related illnesses.
Privacy Policy.

The most important thing in the world to know about scleroderma is!
Donate Now
Copyright 1998-2016, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.