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

Sue 'SASA': Morphea Scleroderma

I am finding it very hard to get anybody to listen to my thoughts and feelings, which I think are substantiated.

Flowers for Sue by Shelley Ensz I am a thirty-eight-year-old woman living in South Australia, where there is a high incidence of morphea. I suspect I have had a localized form of this, on and off, on the lower front shin of one leg for ten years.

It may have started when I was heavily pregnant and I knocked my leg. It took eighteen months to resolve, and I felt feverish and unwell. It felt ten times worse than a bruised, raw feeling.A dermatologist diagnosed morphea after a biopsy, although at first she thought it was erythema nodosum (another skin condition).

Last year, I was wearing new hiking boots, which rubbed a spot on my ankle. The morphea became active again, and it went deep into my inner ankle.

I have been passed around among dermatologists and rheumatologists who now say I am developing rheumatoid arthritis in my right ankle and right hand. I feel these knocks and bruises, now turning into something more sinister, are related. I felt so unwell and feverish that I was wondering if it was hormonal, so I stopped taking the contraceptive pill three months ago. The nodule has gotten smaller and is spontaneously resolving. However, I am left with a deep ache in the ankle and in three fingers on my right hand.

I am finding it very hard to get anybody to listen to my thoughts and feelings, which I think are substantiated. Is there any evidence or information that morphea and arthritis are linked? I feel this is more deep-seated than a dermatologist can handle.

I am hoping to work with a professional and present them with any thoughts, feelings, and facts on the matter.

I feel for all of you and wonder if it took you as long to be diagnosed as it did for me.

To Contact the Author

Sue 'SASA'
Email: [email protected]
Story posted 1-22-02
Story edited VH1: JTD 9-8-03

Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Australian Support Groups
Difficult Diagnosis
Pregnancy and Scleroderma
Rheumatoid Arthritis
Voices of Scleroderma Volume 1

This Story is Featured in Voices of Scleroderma Volume 1

Voices of Scleroderma Volume 1 The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

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 Sue W: UCTD with Neurological and Musculoskeletal Involvement

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.