Written by Anirudh Koneru
Edited by Dr Shyamala Peesapati
Published on 8/31/2020
This is a story that emphasizes standing up in the face of adversity and turning a situation that seems hopeless into one full of opportunities. A story which we hope will fill you with hope, inspiration and positivity.
Dr Shyamala Peesapati is a confident young dentist who graduated in 2019 from one of the finest dental schools, the Government Dental College and Research Institute in Bangalore, India, which is actually the fifth best dental school in India today. The young doctor has no doubt travelled through a very challenging path to reach this far.
Her story began in the year 2017.
Birthdays are usually special occasions, celebrated with joy and laughter; however, disappointment settled like a cloud on Shyamala’s shoulder on her 21st birthday as her father was diagnosed with granulomatosis with polyangiitis (GPA). She still remembers that terrible day clearly: “in the ICU with physical restraints, on the ventilator, weak and fighting for his life against an unknown ‘deadly demon’,” Shyamala said as she described watching her father suffer. This has no doubt left a deep impact on her soul and self.
It all started on a clear sunny morning on April 2nd, 2017 when Shyamala’s father began presenting with a broad range of varied symptoms resembling those of pneumonia and tuberculosis. To be more specific, he started with a dry cough, which gradually progressed to a wet cough, and also displayed a variety of other symptoms including weight loss, loss of appetite, night time sweats, nausea and vomiting, diarrhea, weakness, myalgia and fatigue.
The cough only worsened as the days passed by and no amount of cough syrup or any over the counter medications could help. The initial self battle went on for five days until Shyamala’s family decided they needed to go to a hospital and get his condition checked out.
Fortunately, he was admitted in one of the finest hospitals in the city after a long hunt and waiting period. Alas, they fell in the same boat as others because just like any other family with a lower middle class financial background, they were uninsured. As expected, the hospital bills piled up in what seemed like a mountain of debt.
For four days during the initial stay in the hospital, her loving father was treated symptomatically and after conducting a variety of tests, the team of doctors arrived at a diagnosis of pneumonia tentatively.
But no sooner the “demon” danced and the symptoms flared up and they were back to square one again. Several other doctors on call were consulted, but alas, the presentation of symptoms rendered the doctors speechless and clueless. It was no doubt a jaw dropping case for them with such a wide range of varied symptoms.
A spontaneous nosebleed caused Shyamala’s father to be rushed to the hospital once again, and this really threw the doctors into a loop. This time, the family members and the relatives could only hold their hearts in their hands.
Now, back in the hospital, the doctors treating him went on to treat his condition as tuberculosis (TB). As expected though, once again, there was no response to the treatment. Her father’s condition only worsened which made the doctors think that the strain of TB or pneumonia was multi-drug resistant.
Fortunately, or perhaps unfortunately, one seemingly minor finding that actually helped lead to the diagnosis was the elevated levels of serum creatinine, a clear cut indicator that the kidneys were affected too. So in a nutshell, the symptoms which had initially only involved the respiratory system now also affected the excretory system, the kidneys.
Luckily, the team of doctors were skilled and fairly well versed with rare diseases. After all the hustle and bustle, family counseling sessions, and multiple brainstorming sessions, the doctors went on to do both a kidney and lung biopsy—soon after, the “demon”, as Shyamala refers to the condition, was revealed.
The kidney biopsy showed signs of crescentic glomerulonephritis and vasculitis (inflammation of the blood vessels) which finally allowed for the diagnosis of Granulomatosis with Polyangiitis (GPA) on April 26th, 2017.
Oftentimes, rare diseases take many months and even years to be accurately diagnosed, and this journey is filled with many difficulties including many misdiagnoses. Fortunately though, after only a 24 day long battle, Shyamala’s father was diagnosed.
However, while the speed of the diagnosis was a blessing, the situation itself seemed bleak. This pierced the newly turned 21 year old’s fragile heart, and yet she continued to wear that crown of confidence and fake her strength for the sake of her father.
It didn’t help that Shyamala was in her final year of dental school, and with the pressure of her education coupled with the emotional struggle of her father’s illness, Shyamala’s whole world came crashing down around her.
Initially, Shyamala and her family were shocked. She spent a lot of time “trying to figure out if it was real or virtual.” Her siblings and her mother took several months to come around to the news and accept the situation, and it took even longer for her father himself to accept the truth.
Shyamala said sadly, “It is no easy thing to watch someone so strong and courageous, whom you love and revere so much, fall apart before your very own eyes.” However, Shyamala was also able to see her father overcome this adversity, as her father eventually won the battle against depression and was able to practice self-love after the initial struggle. The light of positivity in all her family members’ eyes began to shine once again as they began to accept the reality of the situation.
Shyamala’s father was just like any other man in most regards. He was an honest and hard-working man, and a loving father to his children. He lived a simple life, and only had the desire to provide a happy life to his family and live a happy life for himself. He started out as a clerk officially, but his journey of financial independence began at the age of 12. When he was 12, he used to work part-time and did many jobs just to support his family back then. He was always in the frontline to help someone in need.
Later, as a fresh commerce graduate, he climbed the ranks, working hard to earn and grow. As the sole bread-winner for the family, he had to remain strong even when the going was tough, and he did just that. Finally, after many years working and earning to provide for his family, her father retired from his position as a finance manager in 2014 to slow down his life and live out his retirement with his wife and children.
The saga of self-love and acceptance was always a challenge as there were varied symptoms and presentations of this disease, not just involving the kidney and lungs, but sometimes the ears, eye and oral cavity as well. In short, GPA could affect any organ at any point of time without giving any short notice.
Sadly, due to the lack of awareness, most of the healthcare professionals that Shyamala encountered hadn’t even heard of GPA, and practically none expressed any willingness to help treat her father. She ended up having to contact various professionals all over the country searching for anyone experienced in the disease who could help her father. It’s no secret that the healthcare system towards the rare diseases is an extreme struggle for most of them, with many patients struggling to afford the care that they desperately require.
Even after all of this, she soon learnt that the only form of care available to her father was palliative, meaning it would treat the symptoms and reduce the pain without actually curing the condition. Due to the nature of the disease and a lack of curative treatment, the only available therapies were steroids and a bunch of immunosuppressants meant to suppress the immune system, as GPA is a disease that is believed to be of an autoimmune etiology. Having said that, there were only six to seven immunosuppressants approved for use as a treatment option for GPA in the country, and each one became ineffective after one or two months as the body grew resistant to it.
Furthermore, the steroids that were prescribed caused an increase in her father’s blood sugar levels, and as a diabetic patient on medications for diabetes, this only made managing the disease even more difficult. “He was walking on a tightrope, I would say,” Shyamala explains.
Above all of these problems, though, the mental struggle was the hardest. Being such a rare disease, GPA was unheard of to most people, and most dismissed it as lies or a falsehood. Her friends were largely unsupportive of her struggles, and she started to lose her self-love and couldn’t find acceptance for herself or her journey.
When it seemed like the real world had lost all hope to her, Shyamala turned to literature to help her through her grief and despair. “I started reading books, felt inspired, and that made me a writer. And the writer in me is undoubtedly born out of this pain of feeling lonely, upset, not having anyone to share my sorrow with. I wanted to vent my heart out and scream, yell at times. Nobody could give that to me, nobody could lend their ears, so maybe I made books, pen, and paper my best friends.” She learned to see writing and literature as an outlet for her emotions and struggles, and soon left behind the person she used to be. “[I was] very upset, depressed, lacking self love, always trying to find reasons to be happy, dependent on someone else to keep me happy, trying to seek validation from the outside world,” she said when asked about her mental battle against the “deadly demon .” “I don’t think I fit any of those categories [anymore].”
It was undoubtedly a tough way for her to manage both her education and her father, as she was the primary caretaker of him back then.
When talking about her struggles, Shyamala emphasized that the lack of awareness was a huge issue for her. She remembers that due to her father’s condition, she needed to take multiple and frequent leaves in her final year of dental school. However, when she submitted her leave letter, she was often asked “What? Can you please repeat the diagnosis?” by the concerned people, which clearly marked the lack of awareness. It was difficult for her to continuously repeat her story, and to have people doubt her struggles at times just because GPA seemed so unknown and almost made up.
And now, whatever has a beginning also has an end! After fighting for over two years with this rare disease, the proud warrior, Shyamala’s loving father passed away and “reached his heavenly abode in September of 2019.”
We’d like to thank this brave warrior for being our rare hero and for leading such an inspiring life. We hope he has found his peace.
Though his struggle was not an easy one, he stayed strong through it all, a warrior in his own right, and is remembered fondly by his children and wife. Now, Shyamala, inspired by her father’s battle, is advocating for the rare diseases hoping that the world will remember her father someday.
Despite all of the struggles that Shyamala faced, after 3 years of fighting and despair, she has emerged victorious, with a mission to improve the lives of others, to ensure that other people did not have to face what she faced. Recently, she has taken her passion to inspire change in the world and joined ORDI, which is the Organization for Rare Diseases in India.
Her goal is to use her voice to teach people about rare diseases and to call upon the voices of others to help bring awareness to this topic. As a result of her efforts to bring awareness to the common person by interviewing patients and advocates of rare diseases, Shyamala now conducts live interviews on Instagram which are saved as IGTV videos (please go listen to her talk on Instagram @the_rare_world).
When asked about how her new project has affected her, she replied that she felt truly grateful. With a smile, she joked, “birds of [the] same feather flock together,” referring to the international connections and friendships she was now making. Most importantly, though, she has learned that she isn’t alone; there are many others facing the same struggles as her, and finally she has found a platform to share her story and her journey with the world. “[There’s] nothing called rare when there is enough knowledge shared,” she says.
Overall, Shyamala has not had an easy life, and her harrowing experiences with rare disease have broken her down to her very core. But she has built herself up, stronger than ever, with love and acceptance for not only others but for herself too. Despite the darkness of her past, she still smiles with joyful abandon, and her positivity is infectious. She is truly a bright and cheerful soul, and does not consider her suffering true suffering at all, but rather an opportunity to use the adversity she faced to bring about more awareness in the world.
When asked what her advice is for anyone with rare diseases or anyone involved in the community, she laughed and said, “ Take more pictures.” You never know when your last picture with the person you love will be. “[I] didn’t know that would be the last picture with my father.” “People deserve to know your story. Don’t seek validation from the outside. Know who you are on the inside,” Shyamala finishes. “[The] battle is between you and you, at the end of the day.”
While the pain of her past will not be forgotten, her hope to make the world remember her father, the proud GPA warrior in the future stays ever strong, and her determination to spread her positivity and spirit remains undiminished.
We wish the best of luck to Dr Shyamala Peesapati in her endeavors to bring about awareness in the rare disease community!
Thank you so much to Dr Shyamala Peesapati for this interview!
Check out Dr Peesapati on…
Instagram:
Advocacy Account: @the_rare_world
Personal: @_shyamala_peesapati
Facebook @Shyamala Peesapati.
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Citations:
Peesapati, S. (2020, August 10). Virtual Interview through Skype.
Peesapati, S. (2020, August 21). Virtual Interview through Skype.