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Jonty: Son of Scleroderma Patient

Hyderabad, India

Many patients are undiagnosed or diagnosed very late.

Flowers for Jonty by Shelley Ensz My dear mother has been suffering from scleroderma for the past ten years. When I was a small boy, my mother's fingers would turn blue. This was more noticeable during winter when it was cold.

She consulted all the specialists in the town where we were living, but none of the doctors diagnosed it as scleroderma or Raynaud's phenomenon.

In 1997, I secured a seat in a medical college in Hyderabad and enrolled for the MBBS degree course. I then took my mother to meet Dr. Narasimhalu in Rheumatology at Nizam Institute of Medical Sciences (NIMS) in Hyderabad. The doctor advised my mother to test for systemic lupus erythematosus (SLE).

When we received the report, it showed the presence of SSA and SSB autoantibodies, and then my mother was diagnosed with scleroderma. My mother's symptoms include Raynaud's Phenomenon (RP), digital infarcts, dyspnoea (breathlessness) and slight fever.

In one year, she has been treated for these symptoms and they are under control. Many patients are undiagnosed or diagnosed very late. I am writing this story so that people will know that they have to approach the right specialist, as early as possible, and obtain the appropriate treatment.

To Contact the Author

New email address needed 08-06-09 SLE
Old Email Prefix: drjonty_2000
Story posted 3-14-02
Story edited V1 7-27-03 JTD
Email address fixed 8-5-03 SLE

Story Artist: Shelley Ensz
Story Editor: Kishori Mundargi
Story Editor V1: Judith Devlin
SSA and SSB autoantibodies
Difficult Diagnosis
Digital Infarcts
India Scleroderma Support Group
Raynaud's Disease
ISN: Kannada
Systemic Lupus Erythematosus (SLE)

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: Kishori Mundargi

Kishori Mundargi is the ISN Story Editor for this story. She is also the Translator for ISN: Kannada Version.

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 Jose C: Linear or Morphea Scleroderma?

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.

International Scleroderma Network (ISN)