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Meet Dr Anubha Mahajan- A Rare Disease Warrior

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Every year, February 28 is celebrated as the Rare Disease Day to raise awareness amongst the masses about rare diseases and to educate them about the challenges faced by such patients and their families. If we go through the International estimate, 6% to 8% of the total population are affected with it making up to 72 to 96 million people in the country, according to the records published in National Policy For Treatment Of Rare Diseases.

Have we ever realised why these diseases are called rare?
They are rare because these illnesses don’t affect a large number of people. Due to a lack of awareness around these diseases, patients are not diagnosed on time. Many people living with such illnesses fall under the web of sheer ignorance and are a victim of absolute medical negligence or they are undiagnosed for many years.
One such story is about a young woman, born in Agra, UP and brought up in Faridabad, Dr. Anubha Mahajan, a Dentist by profession and the founder of Chronic Pain India. Anubha is living with such a disease and narrates her battle with Complex Regional Pain Syndrome or CRPS. Her story is not about a woman with a chronic ailment but of a woman who was misunderstood, not supported and even harassed for her disease. 

Anubha became a Dentist in the year 2014. Like every other girl, she too had dreams to do something for society, especially for the children. But as we say, everything doesn’t happen as we plan. The very same month brought her numerous hurdles after a minor ankle injury was mishandled by a Doctor. The diagnosis in the year 2015 followed many wrong ones before. Anubha still considers herself lucky enough to find it out within a year.

We tried connecting with Anubha to find out more.

After the injury when I went to see the Doctor, he put a plaster which was wrongfully done. It was not needed because there was no fracture but instead of questioning the Doctor, I stayed quiet because I didn’t want to act smart in front of him, not letting him know that I myself was a certified Dentist. The plaster, since it wasn’t placed properly, hindered my leg movement each time I tried to elevate it for blood circulation. The circulation stopped and the tingling sensation was felt below the knee. I went to the Doctor two to three times within a week but he just wouldn’t listen. He adamantly refuted all my complaints and didn’t take them seriously. But the truth was, it was his negligence that caused me this.” Anubha said.

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Complex Regional Pain Syndrome (CRPS) is a form of chronic pain that usually affects an arm or a leg. CRPS typically occurs after an injury, surgery, stroke or heart attack. The pain is out of proportion to the severity of the initial injury. As Anubha described, the disease is trauma-lead and the pain that a patient endures is above the Cancer level. By 2018, there was not a single patient whom Anubha knew in India with CRPS and according to her until the year 2019, there was no standard definition to explain what this ailment was particularly about. The cases are fewer than 1 million and still no cure to it. 

“I remember that on the 5th day, my legs started to swell badly and it turned reddish blue. As I was a Doctor, privileged I would say to understand everything better, I knew that if the plaster isn’t removed, there could be a risk of amputation. Thanks to my mother who reached the Doctor and made him attend me in an emergency, as soon as possible. The plaster was cut but sadly, the damage was done by then. I became a patient of CRPS.” Anubha told EFG.

anubha mahajan treatment

 

Since CRPS is such a rare illness, it has no clinical way of its proper diagnosis. It is an exclusion criteria diagnosis that took Anubha a year to find out what actually she is suffering from. In this case, the pain can travel to any part of the body and in her case, it was progressing upwards and affected her knee area first and then her hip region. The pain was so intense that she was not able to stay still in any one fixed position. 

“I was not able to sit, stand or lie down for even 10 minutes, it was so horrible. And today I live with that pain 24/7”.
“Each time I went to the hospital, there was a new test that was prescribed which eventually was expensive but since I was asked by the doctor, I quietly underwent. But one day, the tolerance level broke when I was asked to get an MRI neurography and the diagnostic center made mistake in doing the test. Just to make money, they gave an appointment on a day when their technician who was equipped to handle the machine was not available. To hide their mistake, they stated that I have a tumor in my left leg. ” said Anubha.

When asked about how she felt during the time of misdiagnosis, Anubha told us that the one reason due to which patients fall prey to such tactics is ignorance. They simply obey their doctors and take any medications or treatment they are prescribed but instead, they should ask the doctors what they are doing. It’s the doctor’s responsibility to give a detailed answer to their patients. It’s a patient’s right to be treated with respect, ask questions related to the treatment to make an informed decision whether to give consent or refuse the treatment.

“Once I was told I had Hip Tuberculosis by a doctor and I laughed at him literally. I told him that I am a doctor myself and Hip Tuberculosis happens only to those who have a family history of Tuberculosis or are living in a bad sanitary condition,” told Anubha. It was ruled out after a scan.

“The pain the CRPS patient goes through can be measured in McGill Pain Scale and is approx 42 out of 50. Once a patient finds out the pain level, in order to know he or she has CRPS or not, there is a clinical assessment known as Budapest criteria.” Anubha added.

Anubha took a year gap after her BDS (Dentistry) to make sure that she is healthy enough to take up the pressure of Master’s. As she always loved kids and wanted to work in the disability sector, in 2016, she went to pursue her MDS from ‘The Oxford Dental College Bangalore’ in Pediatric Dentistry.

As we say, acceptance is tough, so was Anubha’s condition to her department. She was accused, bullied, harassed and most importantly not understood by her own teachers and supervisors. On being asked what kind of traumatic situation she had to go through, she told us that the level of torture was to an extent that made her illness a full-blown one in just a year. The progression, otherwise, could have been avoided for the next 10 to 20 years.

“My physiotherapy was going on and I had to take a leave off, once in a month to give my leg a day’s rest. That one day leave was problematic for my Department. They were not OK with it instead, they mocked me and doubted my character that I might be going somewhere else for parties as I was from Delhi. Comments which can break a moral of a person staying away from home, followed. I stayed quiet thinking that three years would pass. I had a habit of telling everything to my mom before I even tell it to anybody else. When my mom explained it to my teachers that she takes a day’s off because of CRPS, only then they understood but the mocking only decreased, it didn’t stop.” Said Anubha

Premier academic institutes are said to offer a complete transformation of the students in a positive way but for Anubha, the kind of treatment she got only deteriorated her condition. She handled her CRPS condition and academics simultaneously. There was no support from her seniors. The moment she used to raise her voice, she was suppressed. When she went to see her doctor in 2018, she was informed by the doctor that the level of harassment she is facing in the department is progressing her illness rapidly and if she still continues her Master’s, her doctor might run out of options to treat her.

“Silencing a woman is the easiest job but the irony is, the people who harassed and bullied me were all females,” told Anubha.

Anubha started  “Chronic Pain India” in 2017 and after coming back she registered CPI in 2019 as a charitable trust. She did this to raise awareness amongst people about such conditions which were invisible to many and took years to get diagnosed and treated properly. Whatever was her experience, she wanted everybody to know that illness is inevitable and can happen to anybody. Disability cannot be cured with love and empathy but can for sure make the person optimistic towards life and most importantly hopeful. The organisation focuses on bringing a change and erasing the stigma that surrounds rare diseases, chronic pain conditions and invisible disabilities.

It is the sole platform that brings people living with various chronic pain conditions together to be vocal about how they feel and tell their experiences without being suppressed by anybody. 

Anubha who now lives in Gurgaon wants everybody to understand that a disabled person goes through the pain that is invisible and only he or she can feel and understand. If another person cannot heal it with his hands, the least he could do is to be kind to the person who is in pain. 

anubha m ahajan

When we asked Anubha what her stress and pain coping mechanism was, she told us that before she got affected with CRPS, she was an athletic person and good at dancing. Apart from this, she sketches and reads comics. Today she has some 120 comics in her collection. 

“Arts and comics are my two best friends. I am a major fan of Marvel comics, as the marvel universe is also made around illnesses and disabilities, tough situations. If you will read them, you will find out the essence here that something which was difficult has turned into positive and nice.” said Anubha.

Because of her illness, she stopped practicing for a year due to pandemics but, whenever her patients needed her, she was available for them online. She is planning to take admission to a new college soon and re-pursue her Masters after the pandemic but this time it will be Master in Orofacial Pain Or Public Health She said that hardships are written in everyone’s destiny but this doesn’t mean that one will stop moving forward in life.

Anubha’s story is of a woman who never stopped in her life even after being diagnosed with a rare disease. She never let her pain overtake her happiness. She considers her parents as her support who taught her to be disciplined and independent in life. Efforts For Good salutes Anubha’s spirit, optimistic nature and exhorts our readers to speak up for the right. 

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Goonj Is Working With 1000’s Of Volunteers & Partner NGOs To Provide Covid-19 Relief In 18 States

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With the extension of the lockdown the crisis of migrant labourers and daily wagers has just grown bigger due to uncertainty and fear of future. In the migrant colonies, slums and for people in the villages hunger and desperation is building up day by day. This is high time we step up our efforts to support our people who are in dire need of food and hygiene essentials to survive the pandemic, Covid-19.

After the India-wide lockdown, a lot of jobless migrant workers are stuck in cities with hardly any resources while many started retreating back to their villages. With the loss of livelihoods, a large number of them are now struggling to support their families.

Goonj activated its pan India teams and a pan India network of partner organizations and volunteers in urban and rural India. This network, built over the last two decades, helps them learn from the ground, reach material quickly and review and adapt strategy periodically. Intensifying this network has helped Goonj reach and start work across 17produced states/UT in the last three weeks.
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Rahat COVID: Relief Work by Goonj

92,887 Raised
Out of 50,00,000

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No To Hunger : COVID Relief In Rural India

4,39,30,5.5 Raised
Out of 10,00,000

Share

Provide Ambulance : Help Them Reach Hospital On Time

3,82,370 Raised
Out of 62,50,000

Share

Project Annapoorna : Become A Hunger Warrior

7,582 Raised
Out of 1,50,00,000

Share

The Stray Project : A Thought Of Humanity

41,094 Raised
Out of 25,00,000

Share

Ended

Stand By Ladakh

40,962 Raised
Out of 10,00,000

Share

Closed

Support our Frontline COVID Warriors

25,615 Raised
Out of 20,00,000

Share

KHAANACHAHIYE: Fighting Hunger In COVID19

97,02,146 Raised
Out of 1,00,00,000

Share

Campaign Closed
Brought machinery

Empower Poor Women To Rise Out Of Poverty

1,36,544 Raised
Out of 3,85,000

Share

9 Happy Fridges Installed
Ordered a minivan and sent for modification

Goonj’s focus: 

Majority of the Covid-19 relief work by non profits right now is in the metros and cities but Goonj is the only non profit that is also simultaneously focusing on the people in the villages and the ones stuck on highways or somewhere.

Goonj is targeting daily wagers, migrants and other vulnerable groups, who even traditionally are left out like the disabled, sex workers, LGBTQ community.

“COVID-19 is a crisis, yes…But, it’s also an opportunity for us to build the society anew. Not ‘for’ the people…but, ‘with’ the people. And in the process, we will build ourselves too.” – Anshu Gupta, Founder-Director, Goonj.

Direct Monetary and Material Transfer

Wherever Goonj got the permission to open their centres for packing and disbursement of relief material kits, they are creating a kit consisting of 20-30 kgs material including dry rations, masks, sanitary pads and other hygiene material and reaching them to people, as per needs and as per regulations with all safety precautions. This kit will help a family survive for 30 days.

Information till 10th April 2020:

  • Distributed 15,100 ration kits reaching thousands of people
  • Reached 17,700 families
  • Supporting 12 community kitchen across India with 16,600kgs of ration
  • 77,800 food packets provided to migrant laborers and daily wagers walking on the roads across the country.
  • Provided direct financial support to 32 organisations
  • Made 42,800 cloth face masks
  • 24,900 cloth sanitary napkins produced
  • Produced 1500 litres of organic sanitiser

In Goonj’s processing centers its trained team of women are making cloth face masks and cloth sanitary pads (MY-Pads), keeping all the precautions and with the permission and cooperation of the local authorities.

In this lock-down phase if you are facing any difficulty getting sanitary pads or you are running out of stock, here’s a detailed but very simple process of making Cloth Pads at home created by Goonj. “This is how we make Goonj MY Pads.” This is how our mothers and grandmothers turned their spare cloth into pads.

This disaster, unlike any other, is unprecedented in its scale and impact and that’s why we all must do our bit with Goonj to continue its relief work for millions of people in this still unfolding long-tailed disaster.

The need is huge.. We are there.. Need You too !!

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Quote
It's not how much we give
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- Mother Theresa Quote
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