Passionate teacher seeks public help as she suffers from a rare disease

Passionate teacher seeks public help as she suffers from a rare disease

PUCHONG: Nithiya Samuganardan, was diagnosed with the Antiphospholipid Syndrome (APLS) back in 2018.

APLS is an auto-immune disease where the antibody ‘attacks’ the host’s own body resulting in blood clots. She is getting regular treatment at the Universiti Malaya Medical Centre (UMMC).

By the time she was diagnosed with the condition, clots have formed in the pulmonary arteries in her lungs. This has significantly reduced her mobility and have increased risks of organ failures.

In August 2019, she was admitted for kidney biopsy where she became unstable and was hospitalised for a month.

During this time, her stressed immune system have resulted in Idiopathic thrombocytopenic purpura (ITP). It is a bleeding disorder in which the immune system destroys the platelets.

By Oct 2019, with all these complications, she was further diagnosed with chronic thromboembolic pulmonary hypertension. It is a rare form of pulmonary hypertension, a disease associated with abnormally high pressure in the blood vessels of the lungs, caused by the formation of blood clots.

The family members then consulted a well-known cardio thoracic surgeon who then looked into her case, to see if she is strong enough for a surgery to remove the clots.

Unfortunately, their hope was crushed when they found out the surgery is not an option for Nithiya as her heart is very weak and would not be able to survive the intensive procedure.

In addition, the position of the clot is in such a place that it is impossible to be removed. This news devastated Nithiya and her family further.

Due to poor blood circulation, her kidney and liver were affected. Nithiya is also prone to infections. Within a year, she has been rushed to UMMC’s emergency unit multiple times due to infections and difficulty in breathing .

On Jan 9, Nithiya was rushed to UMMC as her heart rate spiked to 119 bpm and she became unresponsive. A week before, she started suffering from psychosis and she was not digesting any food.

At the time of admission, Nithiya was heavily dosed on anti-depressants.

*Psychosis – an abnormal condition of the mind that results in difficulties determining what is real and what is not.

Nithiya is still in hospital and her condition has worsened. She is currently in a catatonic state.

*Catatonia – abnormality of movement and behaviour arising from a disturbed mental state.

She is neither responding to the family members nor the environment. Nithiya is also not consuming any food or fluid.

She is holding her body in an unusual rigid position (hands raised), resisting family and nurses when they try to adjust her body. Staring into the space (if they open her eyes), her condition had also affected her liver as it shows high levels of Bilirubin.

To date, doctors have done the following to find out the root cause of her state including lung and kidney ultrasound, lumbar puncture, brain and lung CT, multiple blood test (on a daily basis), intravenous antibiotics – to treat infection, urine test, intravenous feeding (since she is not ingesting any food on her own), multiple intravenous fluid therapy and physiotherapy.

They are still awaiting for some of her lab results and currently the family and medical professionals are clueless as what is going on with Nithya.

She is expected to make a full recovery in a couple of years time, when she comes out of her catatonic state. However, Nithiya will be needing assistance with medical bills.

She also needs an oxygen generator machine and wheelchair. The cost is estimated to be RM 50, 000 per year.

Nithiya’s family seeks financial assistance as they anticipate her stay in the hospital to be very long. Her family have exhausted all their resources and is currently unable to meet Nithiya’s current and future expenses.

The family described Nithiya, a teacher by profession, as a passionate, fun and an adventurous person before falling ill. She was also known as a dedicated teacher, an understanding friend, a supportive daughter, aunt and a loving sister.

As such, they truly appreciate your donation no matter how small it is, as it would make an impact on Nithiya’s life.

“Teacher Nithiya was like an oil lamp in the night. She shines brightest when she is in her element, i.e our classroom. She always had this never ending energy and never fails to inspire us beyond the four walls of our classrooms. When she spoke, we were immediately transported into another world where we were free to fly on the wings of freedom and knowledge. With heavy albeit hopeful heart, we are penning this to help her.” – Miss Nithiya’s accounting students, class of 2017.

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