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Dr. Shyamala Peesapati is an advocate for patients with rare forms of cancer | The Rare World


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Dr. Shyamala Peesapati of Bangalore, India is a dentist by trade, but devotes a great deal of energy to helping those with rare diseases.  On the day she turned 21, her father was diagnosed with granulomatosis with polyangiitis.  He died in 2019.  Shyamala was unaware of patient advocacy and didn’t know about social media; but she quickly learned of both.

 

After learning of her father’s diagnosis, she was dismayed to realize that for those with rare diseases, in India there was little or nothing in the way of doctors trained to treat such diseases.  She also found it was difficult to locate like-minded people who knew others who had been diagnosed with granulomatosis with polyangiitis.  That’s when Shyamala put social media to use, and became a fierce, tireless advocate for those diagnosed with rare diseases.

 

A lack of specialists with knowledge of her father’s disease resulted being misdiagnosed as a form of lung cancer.  Part of this stemmed from a lack of access to health care, and not knowing which doctor could best provide care for her father.

 

One day when she had nothing better to do, Shyamala went on Instagram and wrote about rare diseases.  She saw some people liked her post, she continued to write on the subject, and that turned her into an advocate.  Shyamala began receiving responses from all over the world.  This led to the creation of her website, The Rare World. 

 

Dr. Shyamala Peesapati hopes her website will inspire those with rare diseases, rare cancers, to speak up.  That way they can connect with patients and loved ones diagnosed with the same disease when because of the diagnosis or where they live, have a difficult time finding doctors familiar with the diagnosis or people they can talk to as a means of support.

 

Shyamala says those who visit her website can expect support, plus knowledge and motivation.

 

Additional Resources:

 

Support Groups:

 

 

McGill University Rare Disease Interest Group: https://www.raredigmcgill.com

 


TRANSCRIPTION


Shyamala Peesapati…

 

Bruce Morton: Welcome to the Cancer Interviews podcast.  I’m your host, Bruce Morton. For some types of cancer, there are immense sources of support resources, and that’s a good thing; but there are other types of cancer you and I have likely never heard of.  For people battling those cancers, there is either little or nothing in the way of support.  Who is there to help them?  On this episode, we will get an answer to that question from our guest.  She is Dr. Shyamala Peesapati of Bangalore, India.  Not only has she experienced such a battle as a caregiver, but she is taking action on behalf of those with rare diseases, rare cancers.  Here she is, Shyamala Peesapati, and Doctor, welcome to Cancer Interviews.

 

Shyamala Peesapati: Thank you for this opportunity.  I am excited to share my story.

 

BM: Shyamala, it is our custom to learn about the lives of our guests outside of their involvement with cancer.  We already know you are from Bangalore, but if you would, tell us what you do when you are not advocating for those with rare diseases and what you like to do for fun.

 

SP: I am Dr. Shyamala Peesapati, from Bangalore, India.  Bangalore is called the Silicon Valley of India.  It is famous for science and technology.  There are many famous places to visit, some palaces and some temples of historical importance.  I am basically a dentist by profession.  In my free time you can see me writing.  I am deeply interested in English Literature.  You could always see me write something or create something.

 

BM: There are, I think, 7,000 rare diseases, but not many advocates for people diagnosed with those diseases.  What inspired you to become such an advocate?

 

SP: Back then, it was my father’s journey.  I was just 21 years old.  Unfortunately, the diagnosis of my father was granulomatosis with polyangiitis, and he was diagnosed on my 21st birthday and that shook my world upside down.  Unfortunately, back then I didn’t know there was something called advocacy, in which we could open our hearts or create awareness.  I didn’t know there was a platform called social media to share our stories and that there are like-minded people, but unfortunately, I lost him in 2019 to a very rare disease, like I said.  I had this burning desire to help others because I was a caregiver myself and it was very traumatic putting myself in the rare disease patient’s shoes.  So maybe I thought if I start sharing things on social media, somebody else would get my message.

 

BM: When your father was diagnosed, I am guessing both he and you were looking for avenues of support for his type of cancer.  Did you find there was little or nothing out there for him?

 

SP: He is basically misdiagnosed as a form of lung cancer.  It was not exactly a cancer.  It was a time when there wasn’t proper outreach for doctors, or we didn’t have access to health care or know which doctor to go to.  That was one side.  The other side is that father was often over-prescribed or never prescribed.  He was at times over-treated or never treated.  There was balance in between and that was where we had trouble.

 

BM: You experienced what your father went through.  That ignited some energy and passion on your part to become an advocate, but having the passion and putting it into action are two different things.  How difficult was it to take that energy and put it into action?

 

SP: It was very challenging, emotionally.  To me it was toxic back then, but now it is okay.  Back then, though, it was an emotional roller coaster ride.  I found it difficult with my caretaker and my family because they didn’t know there was such a thing called advocacy.  They thought I was doing nothing by creating awareness and I wasn’t impacting anybody.  You know, impacting someone’s life takes time, time to understand why I am doing it.  You cannot expect instant results.  So, for me to convince them I am doing something, it took a lot of time.  I was being laughed at by some of my relatives because they honestly don’t like the idea of advocacy, but you can be carried away by what people say around you.  You know what you are doing right.

 

BM: When your father was going through his battle with his disease, did you notice your advocacy was having a positive effect on him, and if so, how?

 

SP: Unfortunately, while I cared for him, I only came across the notion of advocacy after I lost him in September of 2019.  The first of COVID happened in March of 2020.  I cared for COVID patients for three or four months, but then I was isolated for about a month.  I was very much bored, I had no one to talk to.  That was when I started Googling about rare diseases.  One accidental search on Instagram inspired me to write on social media about rare diseases.  When some people like my posts, I thought maybe I should continue writing about rare diseases.  If it wasn’t for that one post on Instagram, I don’t think I would have become an advocate.  What started me on Instagram was my boredom.

 

BM: It sounds like social media helped you get started on this road of advocacy.  Would you say social media continues to do that for you?

 

SP: Absolutely, 100 percent because the kind of positive responses, fortunately, I am getting from people across the world.  People from India were a little slow to catch on to advocacy because it was not okay to speak up, but nowadays they are on social media and getting connected more often.  People from outside India like my ideas a lot and I am getting massive support.  Without that support, I might not have continued because of the negativity I encountered close to home.

 

BM: Speaking of social media, your advocacy effort is spearheaded by your website, www.therareworldofficial.com.  Tell us more about what it does.

 

SP: I want my website to get someone with a rare disease to speak up, because if not, nobody will find you and help you.  People don’t have time to come out of their comfort zone and help you.  With my website, people can expect hope, strength and positivity.  We have to know how many rare diseases can be misdiagnosed.  You can expect interviews, blogs, and you can expect some knowledge and motivation and possibilities.

 

BM: There are others who are involved with a similar push to aid those with rare diseases.  Among them, RareDIG, which stands for Rare Disease Interest Group in Montreal, Canada.  This is an example of another website that is doing the same sort of thing as you.  That said, have you encountered these additional groups?  Because if you have, I would think that would increase the energy for your sort of advocacy, exponentially.

 

SP: You are absolutely right.  I believe in collaborating with other advocates across the world.  My major focus is I want to target the youth, the upcoming doctors.  When the like minds collaborate, there is always some radiating positivity, which is how I see it.

 

BM: Just like those on a journey with rare cancers need support, one suspect you would need support as well.  Not over the internet, but in person, are there those who provide support for you?

 

SP: Some of my close friends who like what I do, they are kind of scared to talk about it, but they admire what I do.  So, if I post something on Instagram, they say good job, keep it going; but it is nearly impossible for them to tell me face to face that they like what I do. 

 

BM: It sounds like at first you ran up against a great deal of negativity, people who were against what you were doing in 2017.  As we record this, it is now 2022.  Do you sense some level of evolution, in other words, are more people getting the idea that advocacy can be a good thing?  Even if you run up against some resistance, can you say there is less resistance in 2022 than there was in 2017?

 

SP: Absolutely, there is less resistance now.  Even people who used to dislike what I do, they now say they respect what I do.  I think the number of people who pull me down are somewhat lesser now.  I am more focused on people who want to be supportive. 

 

BM: What you do gets the word out to people who need support.  As you look to the future, are there more and better ways that people can find out about you, or at this point, are there still very few people who know about you and RareDIG and the like?

 

SP:  I can say I am reaching more people than I might have originally thought I would reach, but I am hoping that by say, 2025, I can be in a better place to reach more people than what I am today.

 

BM: For more high-profile cancers like breast cancer and prostate cancer, it may be easy for support groups to gain support externally, get support from others; but going forward, how tough it is to get the other of others when those others have never heard of certain types of rare diseases?

 

SP: It is extremely difficult.  When my father was diagnosed, I barely had any knowledge of his disease.  I was on Instagram and Facebook, but the talk of rare diseases never hit my mind.  Today more people can have knowledge about rare diseases by finding Facebook groups about the rare disease in question.  I don’t think it is all that hard because technology has improved so much.  The only thing is, we should have that mindset and we should have that knowledge to go check out those groups, knowledge I didn’t have in 2017.

 

BM: Shyamala, we are going to bring this to a conclusion.  I want to ask you, if you encountered someone who had told they had been diagnosed with a rare disease and didn’t know which way to turn, your message for them.  What would it be?

 

SP: The first thing is open up and talk about it because the world has so many people who are willing to help you.  If you close yourself up, it is very difficult for the world to know your problem.  Get on to the world of social media.  The world has so many people who can help you in unexpected ways.  I am an example of that.

 

BM: Shyamala, thank you so much for taking the time to talk with us.  Your website one more time is www.therareworldofficial.com  It can be of tremendous help if you have been diagnosed with a rare cancer or know somebody who has.  I have no doubt your message is going to resonate with somebody who has a rare type of cancer who may be looking for support, but can’t find it.  A great place to start is your website.

 

SP: Thank you so much.  I am really humbled and honored to be here and am looking forward to collaborating in the future.  Thank you.

 

BM: As always, we want to remind you if you are on a cancer journey, you are not alone.  There are lots of people like Shyamala Peesapati who are ready to be of help to you or a loved one.  So until next time, we’ll see you on down the road.

 

Support Groups:

 

The Rare World

 

McGill’s Rare Disease Interest Group

 

The Vasculitis Foundation

 

SHOW NOTES


TITLE: Dr. Shyamala Peesapati, Rare Diseases Patient Advocate – Bangalore, India

 

A dentist by trade, Dr. Shyamala Peesapati lost her father to a rare form of cancer. Her experience as his caregiver inspired her to become a voice for those with rare diseases, who often have little to nothing in the way of support resources. Her message of advocacy can be found on her website, www.therareworldofficial.com.

 

Additional Resources:

 

 

McGill’s Rare Disease Interest Group: www.raredigmcgill.com

 

Vasculitis Foundation: www.vasculitisfoundation.org

 

Time Stamps:

 

02:38 Shyamala explains why she became a rare diseases patient advocate.

04:14 Said her father’s granulomatosis with polyangiitis was misdiagnosed.

06:35 Said her attempts to become an advocate were met with widespread resistance.

07:55 Explains how she learned about advocacy.

10:28 Shyamala explains how her website can help people.

11:53 Says rare disease advocacy is increasing.

16:35 Says it can be a challenge to get advocacy help from others.

18:15 Shyamala has this advice for people diagnosed with a rare form of cancer

 

KEYWORDS (tags):

 

rare cancers

cancer

cancer interviews

granulomatosis with polyangitis

bruce morton

cancer interviews

shyamala peesapati

 





 

 

 

 

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