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“I cannot imagine 10 straight days when I was not in pain”, says Pravalika Meduthuri, living with a rare disease HAE

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HAE – Hereditary Angioedema, is a condition I have known and seen all my life. My dad, uncles, all my male cousins have lived and are living with it. HAE is a very rare and life-threatening condition, with swelling in various body parts and excruciating pain and no cure. From my childhood, I saw my father rushing to the hospital and in constant pain, so much that he got addicted to pain-relieving gels. My cousins and uncles were no different but only worse. Every 10-15 days my dad used to get sick, vomiting for hours continuously. We roamed to every hospital we could and hoped for a cure, at least a diagnosis. But nothing popped up for years. Later we were told by a doctor that it could be HAE, but there are no tests available to confirm. One day my dad got a heart attack and weeks later diagnosed it to be an HAE attack. Then we understood the seriousness of this illness.

In my teens, I misinformed that HAE does not pass on to women. So, for years we ignored all my symptoms and thought it was food poisoning or something else. As a result, it took a few years to get diagnosed. I lost one of my cousins and a dear friend a few years back because of a Laryngeal attack that led to asphyxiation. Although it was nothing new to them, and they handled it for years, the swelling was occurring rapidly and they couldn’t rush to the ER on time. I was shocked, devastated for losing them but also saw a little future of mine in it.

After a few months, my doctor told me that he found a lab that could do the testing. It cost me Rs 14,000 for the initial tests and I wanted to know more about it. So that is when I found genome sequencing. It was very expensive and found that there are 13 links missing in my DNA, and is the cause of HAE.

pravalika


I was relieved to know that I have a diagnosis and also worried because my symptoms were worse than my father’s. I have reached out to many doctors, to know how HAE works and what causes it. There is no cure, and we do not have modern HAE treatments in India, so I rely on painkillers and grew immune to antihistamines. For years I did not know how to handle HAE attacks along with the hormonal changes that were happening to me, as a result of the side effects of the medication I was taking. I was admitted to the hospital every month initially, for days, putting n-number of injections in me.

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But somehow I found the courage to manage it in spite of the turmoil I was in. One particular incident took me off my game.
I was sick for 3 days straight, rushed to the ER twice, got unconscious for a few hours because of the pain, has seizures and was punctured at least half-a-dozen times because they couldn’t find a vein to put the injections in. The memory does haunt me sometimes. If my parents were not around that day I would have been long gone.

Throughout these few years, I cannot imagine 10 straight days when I was not in pain. Nurses had to put cannula to my feet, my little fingers, and I’m glad that I didn’t have to keep a port for injections to date. I would swell up like a pufferfish after eating something, or was too happy, too sad (yes too much happiness can cause an attack too!), couldn’t eat or drink water for days, and had to rely on IV fluids completely and ended up recovering for a few days more.

pravalika

One little ray of sunshine in all this craziness was my loved ones, who stood by my side, did not care for the stigma in the society. All they did throughout the years was to support me in every way they can. I was always seen as a healthy person in spite of my issues because I looked like one. One of the unfortunate things about having an unseen and unheard medical condition. No one believed me for a while until they saw my cannula bruises. What our society is not aware of is there are unseen disabilities, people like me battling just to stay alive and pain-free for a day with all the emotional and physical tornado in them and would look completely normal on the outside. 

After a 10-day attack during the lockdown, I couldn’t risk going to the hospital, so I was forced to look at things differently. It took me a while to know my condition, to find a lifestyle and medication that suited my needs, and to accept living with HAE is my new normal. I have tried different variations of medication, which led to a lot of side effects, but I’m glad to say that I have found a combination. It has been 8 months since I’ve had to rush to the ER, and now I’m able to manage things at the comfort of my home.

Because of HAE, I now manage my emotional state very well, not too happy or too sad or too anything. I have made wonderful friends throughout my journey. I work as a developer and it keeps me on my toes, I am a tech geek and love to experiment with new things. I do art in my free time, I have always connected to my inner emotions through painting/ sketching and whatever I do, mirrors my emotions most of the time. In Spite of my illness, I travel and do amateur photography, capturing the moment as it has always helped me to look back at fond memories that I can relieve. Photography to me, is also a means of looking at things from a different perspective, the one which we usually fail to do under normal circumstances. I also volunteer to manage a few things in HAE India, we are a group of patients who connect, stay in touch through the thick and thin. We conduct small workshops on mental health and HAE management, to help each other. I love trying new workouts, and for a few months, I am able to do as much as I want to.

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It's not how much we give
but how much love we put into giving.
- Mother Theresa Quote

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.
Support the cause you care for. Browse All CampaignsBrowse all campaigns

Rahat COVID: Relief Work by Goonj

81,887 Raised
Out of 50,00,000

Share

No To Hunger : COVID Relief In Rural India

4,36,30,5.5 Raised
Out of 10,00,000

Share

Provide Ambulance : Help Them Reach Hospital On Time

3,77,370 Raised
Out of 62,50,000

Share

Support Pranitha To Donate Oxygen Concentrators

8,30,193 Raised
Out of 30,00,000

Share

Bengaluru Needs Oxygen

6,33,448 Raised
Out of 25,00,000

Share

Help Them Breathe : Provide Oxygen Cylinders

34,79,668 Raised
Out of 1,00,00,000

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 !!

Let us know your thoughts on this story

Quote
It's not how much we give
but how much love we put into giving.
- Mother Theresa Quote
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