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Mani: Son of Systemic Scleroderma Patient

India

Believe in miracles, do not give up!

My mother was always complaining of breathlessness, slight fever, and nails and fingers turning blue when exposed to cold air. This was more noticeable during winter when it was very cold.

She started developing frequent joint pain. She was given some painkillers and advised to exercise regularly. The winter in Jalandhar lasts for four to five months and sometimes the temperature goes below freezing. But we ignored her complaints.

Next winter it happened again, and we continued to ignore it. We thought that it was due to fewer red blood cells. A couple of months later, in mid-1999, we were posted to Hyderabad and we noticed some white patches on the back of her neck. At first we thought that it was just due to a change in skin pigment, so we visited a general physician. He gave some ointment to be applied onto the skin, but it did not help.

We consulted another specialist in our town and after some inquiries, blood tests were done. When the specialist did not find anything, he asked for high resolution computed tomography (HRCT) of the lungs and this gave us the results of interstitial lung disease with honeycombing in the lower part of lungs.

My mother was offered steroids and she improved, but the dosage was not enough. Her body appeared swollen and we thought she was gaining weight, but she also complained of weakness and joint pain. Her physician increased the dosage.

Her life was easier after this. She would do everything, indoor as well as outdoor work, but on October 16, 2001, she got high fever that lasted for a week. The doctor referred her to a rheumatologist, but her condition was very bad and we were not able to visit the doctor.

October 27, 2001, is the day I will never forget. Her breathlessness was so bad that she was not able to talk, eat or drink, and she was immediately admitted to the intensive care unit.

The doctor was very nice. He told us the truth, that my mother had been diagnosed with a rare, incurable illness, systemic scleroderma with Interstitial lung disease (ILD) and respiratory failure type-1. He told us that very little medication was known for helping it and that she would remain only on oxygen.

He was unable to tell us how long she would live. Her lungs were not working properly and the cause of it was also unknown, hence we were told that a cure was impossible. After listening to the doctor, we were totally shocked as we had never heard of such a disease and moreover we did not have any information or idea regarding systemic scleroderma.

My mother was prescribed many medications and she was told not to touch or hold anything cold. One medication caused her terrible side effects with red patches on her whole body, so the doctor discontinued it. Meanwhile, the white patches disappeared, never to be seen again.

Over the next few months she lost weight dramatically and was just a "bag of bones"! Sometimes she had swelling in her ankles and knees and pain in her joints.

Now my mother's condition is such that she cannot live without her oxygen concentrator. Her fingers are swollen, her face is tight, and her lips are drawn.

It is now affecting her hands and feet. She had some severe medication side effects the past few months. Her face started swelling, she gained a lot of weight and she started feeling pressure in her eyes, so her doctor reduced the dosage. For extreme pain in her chest we apply ointment and keep it covered with woolen clothes until she feels comfortable or painless. She is now taking six different medications.

I believe in miracles and know she will be healed soon. My message is: Have faith. Be strong! Do not give up! Face the reality and fight. Never lose hope.

To Contact the Author

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Kishori Mundargi

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

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