Jonty: Son of Scleroderma Patient
Hyderabad, India
Many patients are undiagnosed or diagnosed very late.
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
| Jonty 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 |
LINKS SSA and SSB autoantibodies Difficult Diagnosis Digital Infarcts Dyspnoea India Scleroderma Support Group Raynaud's Disease ISN: Kannada Raynaud's Systemic Lupus Erythematosus (SLE) |
This Story is Featured in 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
Judith 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!
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.