Support Sickle Cell Anemia Patient in Maharashtra

by Maharashtra Arogya Mandal
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Sickle Cell Camp Glimpses
Sickle Cell Camp Glimpses

The difficulties are REAL..they pose challenges ..not to freeze us in the process but to give us a new perspective to look at the condition..And most of the times we never realise about our own potential to see through the path.

Its been more than 650 days since the world faced the Pandemic. Like its said; ‘“If you are faced with a mountain, you have several options. You can climb it and cross to the other side. You can go around it. You can dig under it. You can fly over it. You can blow it up. You can ignore it and pretend it’s not there. You can turn around and go back the way you came. Or you can stay on the mountain and make it your home.”

We are still fighting this Pandemic along with its collateral damage and trying to find our way around this mountain of challenges.

For Sickle Cell Disease maangement during pandemic we organised six camps in Dhadgaon and Akulkheda from October to December last year . We served more than 120 new patients and more than 840 old patients. Distributed medicines, warm clothes, nutritional supplements and provided counselling.During our six screening and treatment camps we realised that we need financial support and in kind support following six areas:

Providing reusable masks, sanitisers and soaps for daily uses.

Free COVID vaccination for sufferers as well as carriers along with caregivers.

Provision of nutritional supplements and warm clothes.

Emotional and Medical support with nearby healthcare centre.

Continuous supply of medicines in case of further lockdown like scenario.

Emergency medical care for sickle cell crisis patients.

 

The immunity is that 'life guard' that sickle cell patients often struggle to hold. We needed to work for giving them extra shield of care.We at Maharashtra Arogya Mandal would like to appeal for more healthcare aids and funds.

We know that your support is with us always...not for just additional help but to pass on the undying HOPE.

Until next time.

Free Medicine distribution during camps
Free Medicine distribution during camps

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Keep Moving !
Keep Moving !

This is the story of perseverance in the face of diversity and how we stayed a little bit longer with pandemic problems. 

 

This report highlights our Sickle Cell relief work from May till August 2021.

 

Maharashtra Arogya Mandal has a inspiring legacy of ‘NOT GIVING UP’ no matter what. Our team asked one simple question ….’Can we try one more time?’ 

and thats when we realised we can fight a little bit longer with these problems. We can not give up on hopes and goals for sickle cell healthcare services. 

 

Pandemic taught us the lessons of patience and perseverance in a very hard way in 2020. That was the time when we really thought the road to serve tribal areas and remotely located sickle cell patients is not reachable. Slowly we worked around that bend and tried to develop new collaterals to reach out our beneficiaries.

 

Bimonthly frequency of camp was tough considering COVID restrictions. The whole situation was ‘time bound’ as medicine supply with patients was limited only to 30-40 days. 

 

Sometimes problem itself gives us a push to find solution. We decided to call the help of local volunteers again and divided their tasks into tracking old patients, counselling, screening new patients and dispensing the drugs. 

 

We changed our screening and dispensing camp frequency to monthly. That reduced the accessibility issue to a large extent as we were focusing only on those patients who need immediate supply of medicines. Monthly visits by volunteers reduced the burden on resources. 

 

Volunteers again got divided in two teams one for Dhadgaon and other for Aakulkheda (Chopda). 

 

All old patients were served in Dhadgaon with more than 1200 old beneficiaries in just three months.In Aakulkheda (Chopda) unit we screened new patients as well. With 27 with AS trait and 33 SS trait and dispensed medicines to more than 300 old patients. 

 

The smile on patients faces was really contagious, courageous and with full of joy and hope.This little bend lead us to a beautiful view ahead. Once again it was proved that ‘when intentions are right everything falls in place.’

 

Volunteering / Local support group solution was simple, smart and feasible in the most challenging condition of covid. Monthly visits gave us more opportunities to reach out to new as well as old patients.

 

“Most people give up just when they’re about to achieve success. They quit on the one-yard line. They give up at the last minute of the game one foot from a winning touchdown.” (Ross Perot)

 

But FEAR OF REGRET…REGRET OF NOT TRYING AGAIN…REGRET OF ‘WE COULD HAVE’ …REGRET OF ‘WE MISSED IT’ got us going. We just stayed on the track…hanged on a little bit..walked in the dark..and everything bounced back to much better place.

 

Now we believe that…”Patience is the mother of Perseverance”.

Lets hope and pray that everything will be okay soon. 

Until next time… !

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COVID pandemic has changed the true sense of LIFE. We realised that many things are beyond our control and trivial human capabilities. We also realised the power of family and friends…our own little safe shield of the community.

Pandemic showed us the mirror where an introspection was needed. We suffered..we learned and we kept going ! 2021 brought us its own set of challenges in India like second wave, vaccinations, unsafe medicines and endless quest of oxygen/ventilator beds.

It’s said that “Resilience is accepting your new reality, even if it's less good than the one you had before. You can fight it, you can do nothing but scream about what you've lost, or you can accept that and try to put together something that's good”.

Maharashtra Arogya Mandal tried its level best to continue the outreach activities for sickle cell patients. Due to the new surge in covid cases in India; our team could not visit the local centre. However, we used tools of telemedicine, WhatsApp and got help from local volunteers in reaching out to patients.

There was a time in the last quarter of 2020 that COVID is one time crisis and this pandemic will be over by 2021. We thought that our regular camps will resume from March 2021. Unfortunately, new cases and lockdown guidelines did not allow us.

Our tribal sickle cell disease patients suffered all the more with limited healthcare access and no vaccination. Their regular medicines were also getting over and monitoring of sickle cell disease status was also on hold.

Some of our patients were tested positive for covid and faced major problems, some of them also needed hospitalisation. We supplied medicines via courier and post. Patients needing additional COVID specific counselling or treatment were contacted and guided to the nearest COVID centre.

Our virtual meeting with the help of local doctors / village representatives got overwhelming response. We planned all the activities remotely with their help.

 

Dhadgaon and Akulkheda outreach activities were successful with total 1203 beneficiaries. (Jan to April 2021 with 768 adults and 435 children)

Sickle Cell Dawakhana Dhadgaon: reached out to total 879 ((Jan to April 2021.604 adults and 275 children)

Dr. Dada Gujar Sickle Cell Kendra Akulkheda (Chopra): total 324 (Jan to April 2021.164 adults and 160 children)

 

With this report we would like to emphasise the need of more care of these extremely vulnerable patients of sickle cell disease.

Our activities during lockdown suggested that patients with genetic blood disorders like sickle cell disease may be at an increased risk of developing serious COVID-19 symptoms and must follow extra precautions. We have created a 10 point plan to cover major lookout areas for sickle cell patients to prevent themselves from COVID and also to maintain their health.

 

10 point Care Plan for Sickle Cell Patients in COVID pandemic.

1. Stay home as much as possible.

2. Keep in touch with your doctor.

3. Have enough stock of regular essential medicines and supplies.

4. Social distancing should be observed in crowd in case need to step out.

5. Non-essential travel should be avoided.

6. Immediately consult nearest healthcare providers in case of COVID-19-like symptoms.

7. Support groups will help to stay calm in these testing times.

8. Nutritious diet and health supplements will help to maintain health.

9. Monitor health parameters regularly.

10. Stay warm and well hydrated.

 

We hope our efforts will get support from our donors so that we can strengthen our outreach activities.

Lets be hopeful..that POSITIVE word will have that same “POSITIVE AURA” again.

 

Until next time…

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Retro Photo Courtesy : Dr Pranita Joshi Deshmukh
Retro Photo Courtesy : Dr Pranita Joshi Deshmukh

Simho yatha kinciddesam gatva punargrivam vivrtya pasyati tatha simhavalokana nyayena visayam punar darsanam |

 

Simhavalokana is a Sanskrit term to symbolize the retrospective contemplation of a lion. It is said that as the lion navigates some distance in the jungle, he looks back to examine the path he chose and how he covered that distance.

Why a KING needs RETROSPECTION?

The answer;

“The RESPONSIBILITY of ‘being the KING’ demands Retrospection, to analyse implementation of power and the way you deliver to your people”.

Lion King is the representation of that position/activity which gives you power to make a change. For Maharashtra Arogya Mandal that power is ‘to be able to serve the tribal people suffering with Sickle Cell Anaemia’. Every power comes with a responsibility, to stay committed to the cause, action and objective and hence that retrospection helps to keep us on the track.

As the year 2020 ends; it’s time to analyse all pandemic challenges we faced, examine our ‘knee jerk’ responses, think about the future preparedness, learn from our mistakes, unlearn outdated skills, find out the solutions and begin once again with a fresh start to this new year…with a hope that we will be ready to face it with a smile.

The year 2020 started with Diamond Jubilee Planner for various social activities with an action plan for 100 socially driven programs. As the pandemic hit Maharashtra, Survival and Sustainability became priorities and we changed the direction of our ship.

Our Sickle Cell Centre being far off in tribal areas got isolated from medical help coming from Pune. This was the time we fought with the fuel of commitment and responsibility towards more than 5000 patients of sickle cell Anaemia.

We continue our support with the help of local teams, virtual monitoring, sending medicines by home visits so that we could keep the essential supply of medicine kits for children and adults. Please check out our report for 2020 as we delivered 500 sickle cell medicine kits for adults and 414 kits for children.

This year was challenging but special because we realised 'we are not alone' in these testing times..we have YOU all..our GlobalGiving Community.

With appreciation and gratitude for your support; we pledge to the serve for coming years too..

and here we are welcoming 2021 with the same old spirit of 'Moving on" !

Until next time.

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Medicine Dispensing
Medicine Dispensing

Patience and Perseverance are life skills taught by COVID this 2020.

As per our regular protocols, we dispense medicines every two months so as to take a follow-up screening and clinical camp regularly for tribal sickle cell patients.

2020 started with organizational Diamond Jubillee plans and deadlines to catch. However, by the end of April, action for 'Development' got replaced with 'Sustainable Safety'. Maharashtra Arogya Mandal is committed to contributing to community needs as frontline support.
Celebrations of Diamond Jubillee were canceled and a new action plan was developed to help unreachables during the lockdown.
As evident in the report of May we reached out to more than 2400 patients with medicines and manged their requirements during the nationwide lockdown.

The lockdown and other social gathering related guidelines; stopped us to rearrange the next screening camp in August.
This new challenge and need forced us to find a new solution to carry out
August month camp.

This August, we identified the courier/ transport system to deliver our medicines manufactured in Pune to reach two camp-sites in Chopda and Dhadgaon.
Our residential medical officer with his local volunteer team tried to reach out person to person, family to family, and community to community.

A total of 1171 adults and 761 children were reached with the necessary supply of medicines and supplies.

Precautions like Social distancing, masks, sanitizer use, and sterile packaging were used for medicines and assessment activities. Area-specific dispatches were made possible with local volunteers for patients who couldn't reach to centers.

Indeed... "Patience and perseverance have a magical effect before which difficulties disappear and obstacles vanish".

We look forward to sunny days ahead with hope!
Till then we are not going to give up...
This too shall pass... Our spirits are high.


Stay safe and Be Humane.

Until next time..

Children were clinically assessed
Children were clinically assessed
Masks were Mandatory
Masks were Mandatory

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Organization Information

Maharashtra Arogya Mandal

Location: Pune, Maharashtra - India
Website:
Project Leader:
Anil Gujar
Pune, Maharashtra India
$11,161 raised of $35,000 goal
 
171 donations
$23,839 to go
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