SCLERO.ORG
Search
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

Katy: Morphea Scleroderma

It took nearly a year to get my diagnosis.

Butterflies for Katy by Shelley Ensz It took nearly a year to get my diagnosis. The first two doctors told me I had ringworm. The third doctor told me I had post-inflammatory syndrome from having had ringworm.

Finally I found a wonderful dermatologist who diagnosed me with morphea after I had a biopsy done. It is on my stomach (1 to two inches), my shoulder and bicep (almost covered totally), and two spots on the back of my leg (three to four inches).

I was so happy to find this site. I am embarrassed to wear sleeveless things and I am scared to put on a bathing suit—and summer is on the way. I am currently on doxycycline but it isn't really helping.

Thank goodness I haven't noticed any more spots—knock on wood. I have just recently realized my fatigue is probably associated with this. If anyone out there had treatment that worked please let me know. You know, I did not think I was vain until I got this. Funny how your priorities change.

The muscles in my arm get sore often. Does anyone else have this problem where your "spots" are? You are all in my prayers!

~ Update 09-14-01 ~

Unfortunately I have more spots and the original ones are bigger. Although the one on my stomach is almost gone and only left a shiny spot with almost no discoloration.

I am still sort-of dealing with the emotional aspects and consequences of a disease such as ours. I recently heard of make-up for burn victims and people with severe scarring. I think it is waterproof and available at large department stores.

I always feel alone in the world with my disease, especially when people ask me about my "spots". Because as everyone knows they are always in obvious places! Then I come here and realize there are more of us! Everyone take care and may you be blessed!

To Contact the Author

Katy
New email address needed 08-06-09 SLE
Old Email Prefix: KLANDMK
Story posted 5-23-01
Story update posted 9-14-01

Story Artist: Shelley Ensz
LINKS
Difficult Diagnosis
Morphea
Go to Kay: Linear Morphea Scleroderma
 
 

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.