Over 2,200+ pages in 22 languages!
 
Patient & Caregiver Stories Main Menu
(English) Stories 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
All Stories by Date Posted: 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008
Stories by Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms
Stories by Language: French | German | Greek | Italian | Polish | Romanian | Russian | Spanish | Turkish
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
Old Email: oblate@tiac.net
(New email address needed.)
Story Posted 4/8/99
Story edited 7-14-03 SLE
Email comment posted 7-14-03
Story Artist: Shelley Ensz
LINKS
Pulmonary Hypertension (PH)
Scleroderma (SD)
New Personal Stories
Alana: Scleroderma (Peru) I cannot open my mouth completely, I have lost strength in my hands, I have breathing problems, my face looks different, my skin is really tight and I have lost my appetite...
(Español/Spanish) Alana: Paciente Nuevo con Esclerodermia (Peru) Le dije que ya no podía abrir la boca completamente, he perdido la fuerza de las manos, tengo problemas respiratorios, mi rosto está diferente, mi piel está dura y he perdido casi el apetito...
Kristy C: Generalized Morphea The only place where I do not have any morphea is my face, which I am very thankful for...
(Update) Raymond: Surviving Son of Scleroderma Patient On October 19th, the Herbert family lost another member of the family to scleroderma. My uncle Edmond has passed on...
Sharon H: Scleroderma/Morphea It has been thirty-two years living with this and it has progressively gotten much worse and has spread...
Teena: En Coup De Sabre My mother and I went to Johns Hopkins Hospital. They did what was called 'Grand Rounds' where about fifty doctors were looking at me taking pictures and videotaping me...
More New Stories: November 2008
Submit Your Patient, Caregiver or Survivor Story in:
Arabic  | Dutch  | English  | Español  | Deutsche (German)
Italiano  | Polski  | Russian  | Spanish  | Turkish  | Other Languages
We will edit your story, create original artwork to decorate it, prepare it for the web, and post it on this site. Just fill out our simple Story Submission Form for your story, updates, or email address changes.
Keep on Surfing!
Go to Buggzy: Autoimmune Hepatitis, Fibromyalgia, Undiagnosed
Contact ISN. We are a full-service nonprofit agency.
Email: isn@sclero.org or
Post in Sclero Forums!
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702
USA
Toll Free Hotline in U.S.
1-800-564-7099
Direct Line
1-952-831-3091 (U.S.)
(We are also known as the Scleroderma from A to Z web site.)
© Copyright 1998-2008 International Scleroderma Network
All Rights Reserved