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

Brother Alan: Systemic Scleroderma with Thoracic Outlet Syndrome and Acute Nerve Compression of the Brachial Plexus

I worked with the best and I worked like a dog, but I loved it.

Ink stipple drawing of goose by Shelley Ensz  Copyright 1999 Shelley L. Ensz, All Rights Reserved It is so long ago now, that it is hard to remember just how this nightmare began. I was ten years old and woke-up one morning with incredible arm pain. I mean major pain, tears included. They took me to doctors, but there was no diagnosis. That was 1960.

I was a gifted pianist and grew to desire a career in music. I studied hard, and went away in the summers to study. The pain in my arms and hands continued and worsened, costing me my career at age twenty.

But all was not lost as I ended-up as a professional theatre director/producer with a truly wonderful career. However, I was forced to pause for months at a time for horrendous ten-hour operations to remove bones, scar, and miscellaneous stuff from my brachial plexus. Hold onto "scar".

I worked with the best and I worked like a dog, but I loved it. I met my wonderful wife in college and we have now been married twenty-five years. We have one child from Korea. Unfortunately, the pain in my arms and hands was only the beginning. I got sicker, and the pain worsened. Doctors, hospitals, doctors, hospitals. Answers, no answers. We were ready to pull our hair out.

It had to be more than twelve shoulder surgeries for thoracic outlet syndrome. But I knew something more lurked. I was diagnosed with scleroderma three years ago and "too many times ten" doctors later, here I am.

Finally a diagnosis, as you see! It was hard to accept leaving the theatre, but after falling down in New York City, I had no choice. After many more doctors came the diagnosis of pulmonary hypertension, which is treated with oxygen and a medication to dilate pulmonary arteries.

I regrouped, and put my pastoral training to use by opening a practice to help people accept their illnesses. But that got to be too much, so now I hope to help others via the Internet. I promise that I will get better at it.

To Contact the Author

Brother Alan
New email address needed.
Old Email Prefix: oblate
Story Posted 4/8/99
Story edited 7-14-03 SLE
Email comment posted 7-14-03
Story Artist: Shelley Ensz
Pulmonary Hypertension (PH)
Scleroderma (SD)
Go to Buggzy: Autoimmune Hepatitis, Fibromyalgia, Undiagnosed

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.