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
Medicines finally reached the destination.
Medicines finally reached the destination.

This is the time when “COVID, Pandemic, Isolation, Quarantine, Vaccine” like alien words reached tribal population suffering with Sickle Cell Anaemia instead of our regular team of doctors coming from Pune. Our screening camp which was scheduled on 29th March for distribution of medicines and screening of new patients couldn’t get through due to sudden pandemic crisis followed by country wide lockdown. This was the time when no one was prepared for worst case scenarios with no backups or plan Bs. Everything suddenly changed and we need to cancel our camp first time in the history of 20 years.

We generally send letters as a routine practice to reach out to tribal community residing in ‘No Cellular Network Zone’. We came to know that some of the patients have already left their houses to reach our sickle cell outreach centre. Some of them were coming only for collecting their two month medicines.

There was requirement of medicines for these old and new patients which eventually build up their pressure as patients started contacting us. They were helpless ..desperate..worried without medicines.. their only hope to keep things under control like Haemoglobin was our SC3 tablet. This demand of medicines was now mounting up as 1600 adults and more than 800 children were in need of SC3 tablets and pediatric syrups.

We approached local newpapers and reported our story appealing for help from government authorities. Our cry for help reached right ears.

As Elie Weisel once quoted “Just as despair can come to one only from other human beings, hope, too, can be given to one only by other human beings.” Our hope too came from other human beings…this time in the form of Civil Surgeon Dr Raghunath Bope a government authority at Nandurbar who could send in his vehicle to our Pune pharmacy to collect medicines for more than 2400 patients in the time of lockdown.

Our medicines were ready in Pune and we could send them as soon as the vehicle reached our pharmacy. However distributing these medicines was also a challenge. Our limited space of clinic and big crowd management was effectively managed by local government authorities.

Their team distributed medicines with proper care of social distancing. We could see the relief these patients felt when they saw their medical supplies for two months.

Sometimes we face problems so that a solution can be discovered…but often we forget that with every challenge or problem in life …we discover our new strengths in the darkest hours giving us new hope to tackle future bravely.

In the times of COVID or CORONA …Disappointment, fear, insecurity, panic was common but we managed to see COVID in new light of togetherness, team work, hope, joy, happiness, caring and giving.

We could see new story of positivity in the term CORONA. The Sun’s corona is the outermost part of the Sun’s atmosphere. The corona is usually hidden by the bright light of the Sun's surface. That makes it difficult to see without using special instruments. However, the corona can be viewed during a total solar eclipse. So it’s important to remember that setbacks, failures, and tragedies – however painful they may be – are a part of life to see the bright corona light and count our blessings.

Sickle cell outreach activity is inspirational in many compassionate ways with such stories of values and true spirit of humanity. We always learn new lessons of life.. most important one, is,   NEVER GIVE UP..KEEP WALKING !

Whether we manage to find joy and success in the daily struggle of life is largely dependent on our ability to persevere through even the toughest adversity without ever giving up.

Life has a way of kicking us when we’re down. And just when we think we can’t fall any lower, we get kicked again to rise up and reach new heights.

We would like to express our gratitude towards our 'Hope' Dr Bope and his team who become new hands to help sickle cell patients when ours couldn’t reach out.

Wishing you all lots of hope, courage , love and strength in these tough times.. 

Lets prove that we are the real tough ones here … to last longer.

Until next story to share..

With lots of good wishes and prayers

Yours Sincerely

Dr Pranita Joshi Deshmukh

Lockdown couldn't lock our spirit to reach out
Lockdown couldn't lock our spirit to reach out
Our Cry For Help.. reached right ears.
Our Cry For Help.. reached right ears.

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Til Gul .. the winter super food.
Til Gul .. the winter super food.

60 years are considered to enlighten an individual with his/her life's shares of failures, success, hope, experience, trials, errors, responsibilities, delegations, love, detachment, triumph and achievements with all shades of white, black and grey. However, when organisation turns 60… It grows not only in all above dimensions and attributes but also widens its area of work in terms of impact it can create with stronger rooted humane connects.

Maharashtra Arogya Mandal is entering into 60th year and we the team of more than 550 staff have taken a pledge to celebrate this achievement of social reform with more work...more outreach activities..more impact..with more giving..GlobalGiving.

Every year our patient data gives us motivation to go on. Every two months screening camp gives us new set of population suffering with Sickle Cell Disease. In September 2019 we served more than 1445 patients with 1146 old and 299 new patients with newly detected 76 sufferers and 112 carriers. As we wrapped up our 2019 with December camp of 974 old and 201 new patients of 55 sufferers and 84 carriers, we pledge to continue our work in coming years with maximum beneficiaries.

This winter we distributed healthy food supplements like nutritional laddoo…eggs along with medicinal care. “If winters are here, can spring be far behind”, the definitive P.B Shelly line fittingly sums the ethos of India's Makar Sankranti merriments. Makar Sankranti is the harvest festival that is marked by suns' shift in position. Around 14th January, the sun enters Capricorn (Makar in Hindi and Sanskrit) and starts on its Northward journey, a transition called Uttarayan in Sanskrit. During the last quarter of the year, when the sun is travelling towards south, the crop harvesting takes a backseat because of limited sunlight and harsh weather conditions. Which is why when the sun boards upon its journey to the north, it makes for a celebratory occasion for not just the agricultural community but for the entire country who had been struggling with the winter despair. 

In the life of sickle cell patients this festive time brings joy as they get rid of pain triggered by winter. Til (Seasame) and Gul (Jaggery) most economical, easily available winter super food is the dish of this festivities. Til and gul are also valued in Ayurveda as two of the winter-perfect foods that helps to keep the body warm and also increases the immunity at the same time. The oil present in the sesame seeds helps generate body heat and keeps the internal body temperature from dipping. At the same time, jaggery's iron and vitamin C content has also been used as a traditional remedy for respiratory disorders and throat problems.

Since 90s with Sickle cell Anemia screening, counselling, treatment and prevention Maharashtra Arogya Mandal has made its mark in India. This initiative has taken a new leap with newer ways to reach out… with social media, help groups, screening camps …just finding more ways to help.

Sickle Cell Anemia is one of the priority areas of our work since then and we are committed to find solutions that gives additional edge to research reducing global burden of the disease.

With new year we are aware that ... you ... our gracious donor partners will boost up our efforts to reach out.. to help more .. and bring some warmth in their dull shivering lives affected by sickle cell anaemia. We celebrate our bond with you all 'with til gul' and express our gratitude for productive and fulfilling 2019 with a hope to bring more delight and sunshine in the lives around us.

Year changes .... Decade changes ... but the passion to serve the community in priority areas of health, education and rural development takes a new height... with the magnificent mark of Diamond Jubilee.

We wish you a great year ahead.

Happy Makar Sankranti.

Happy New Year.

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Happy Diwali
Happy Diwali


"Subham Karoti Kalyanam Arogyam Dhana Sampadah
Shatru Buddhi Vinashaya Deepa Jyoti Namostute

"I fold my hands before the light that brings prosperity, auspiciousness, good health, abundance of wealth and destruction of the enemy's intellect". Here, Darkness symbolizes enemy's intellect and with the arrival of light, darkness disappears. Likewise, light (God's Grace) destroys darkness (enemy's intellect).



"Deepajyothi Parabrahma Deepajyothi Janardhana
Deepo Me Hara Tu Paapam Sandhya Deepa Namostute"

"I fold my hands before the lord, the maintainer of this creation, in the form of this light. I adore this light, which destroys all the pains resulting from my omissions and commissions".

On this auspicious festival of lights ‘Diwali’ … I am glad to write about sickle cell fighters as we at Maharashtra Arogya Mandal always find them inspirational.

Maharashtra Arogya Mandal has always thought about sickle cell community very proactively.

Sickle cell community is dynamically diverse in terms of their socio- economical background, health status, access to resources and their needs from healthcare sector.

Patients are aware about their dependency of health status on variables like climatic changes, nutrition, medicine, intensive care and sometimes timely surgical interventions. They make difficult choices like to select recurrent blood transfusions, painkillers or surgery… sometimes this choice comes to who and how many family members or children as well. Every family has more than 3-4 patients where head considers his responsibility to take decisions for equal opportunity of care for all his dependent members.

This Pre Diwali-screening camp in end of September we treated more than 1144 old patients and screened 299 patients with normal trait 76 and carrier 112 and disease patients 111. All these patients came along with their un-screened family members so that they also get to know their status of disease.

Now patients understand that if they get screened there is a chance of better healthcare for better future ..better quality of life.

One of the patient said.."This screening test and introduction to our centre is his Diwali gift for his relative staying far away from the healthcare access".

In all these odds and uncertainty around He was positive, hopeful and making others ready for better life ahead. All these patients are guided by the light within.

They never appear sad, they never give up.. they are with hope … they are thankful and happy for the life they got. Sickle Cell Patients … sufferers or carriers …are not just suffering with disease but they are the best example of living life to the fullest with in depth gratitude towards each moment they get .. they are indeed thankful to donors who gave them reason to smile on this Diwali.

Maharashtra Arogya Mandal appreciates all the efforts of our donors to help us light a lamp in the lives of sickle cell anaemia patients.

Keep spreading the light. May you all be blessed with health, prosperity and joy on this Diwali.

Namaste.

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A freshly passed out post graduated doctor Dr Vishal (name changed on request) visiting our outreach center in Dhadgaon was enthusiastic to be part of this initiative for the first time...however once we reached the center he was saddened to see deeply worried faces of Sickle Cell Disease Patients. He wanted to help but wasn’t sure how and when? Is there any medicine for happiness especially for those suffering with genetic diseases with a destiny of pain and worries? This question from his first visit was genuine and took us to need of genetic counselling, emotional support with preventive and therapeutic management for sickling crisis like conditions.

His emotional turbulence; with empathy, willingness and curiosity ‘to explore a HAPPINESS pill for Sickle Cell Patients’ was so evident that lead to a quest on “How a doctor/volunteer/donor /government agencies serve SCD patients better … not only for their bodily sufferings but also for mental agony.”

The Sickle Cell disease is making itself ‘marked’ in metro cities like Pune or Mumbai. This increasing number could be a result of migration from rural to urban areas and sometimes inter caste marriages or lack of pre-marital counselling.

New doctors like Vishal need to understand the changing book picture of community medicine statistics and presentation of the disease. How to identify Sickle Cell Patients, how to work on validating our theoretical knowledge and how to manage the patients with limited resources could be a challenge in front of future doctors as well.

Chronic illness is a daily reminder of struggle, which seems unending. Sickle Cell Patients live with this identity of sufferer or carrier of the disease throughout their limited painful lifespan. Understanding disease by all stakeholders is first step to treatment however understanding the mindset and psychology of patients suffering with genetic disease always remains a road less travelled by doctors.

As someone who lives with a rare disease, people often have a very different perception of how a patient think, feel, and live each day of  his/her life. “While I have an illness, I am NOT my illness. It is merely a part of me.” Kind of Psychology needs a big boost. This can only happen when doctors are aware about patient’s pathophysiology as well as psychology.

After the camp activities our team always illustrates and train new enthusiastic doctors like Vishal on following three actions points

  1. How mental health support and genetic counselling is important to patients living with Sickle Cell Anemia. As the likely increases in availability of DNA based tests and demand by patients for genetic information and advice mean that primary care practitioners will need to become genetically literate.    [*North West England Faculty of the RCGP.Genetics in primary care. A report from the faculty genetics group. London: Royal College of General Practitioners,1998 (Occasional Paper 77).Google Scholar **Andrews LB, Fullarton JE, Holtzman NA, Motulsky AG.Assessing genetic risks: implications for health and social policy.Washington, DC: National Academy Press,1994.Google Scholar]
  2. Genetic medicine is already beginning to enter the realms of primary care through the availability of testing for predisposition to certain cancers and carrier screening and diagnostic tests for common recessive disorders such as cystic fibrosis and hereditary haemochromatosis. For the near future these issues will probably remain the focus of genetic medicine in primary care, but this could shift if pharmacogenetics research fulfils even some of its early promises.
  3. Mental Health Support for Sickle Cell Patients is need of an hour. This can be done with Genetic Counselling as well as ‘Living with Disease’ Counselling. We can bring a smile on patients’ faces with making them equipped with hope, courage and approachable treatment facilities.

It’s aptly said that “Nothing is more beautiful than a real smile that has struggled through tears.”

Out genetic counselors work as members of a healthcare team, providing risk assessment, education and support to individuals and families at risk for, or diagnosed with Sickle Cell Anemia.

We held Sickle cell camp on 29th July 2019 with 62 new patients- AA ( normal) – 21;AS ( Carrier) – 28; SS ( Sufferer )- 13 along with free medicine distribution to 580 old patients.

At Maharashtra Arogya Mandal we try to make every day in the lives of sickle cell patients less painful and more joyous with such little attempts to give them little sunshine of happiness. .“Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.’” This quote from Mary Anne Radmacher illustrates our untiring effort.

Organizations like Maharashtra Arogya Mandal need new socially oriented, technologically sound and empathetic doctors but these new generation of doctors need your support..and resources to keep going.

 Until next time..keep spreading happiness !

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Patient Rush
Patient Rush

During the March screening camp at Chopda and Nandurbar centers we screened more than 1200 tribal people and found out more than 127 new patients with 56 carriers and 43 sufferers of Sickle cell disease.

During this camp we also identified some of the crucial problems in coming months as summer is approaching and temperature conditions will get challenging for sickle cell patients particularly children.

Summer Challenges for Sickle Cell Patients are mainly

1) Staying Hydrated

Children with sickle cell anemia require an increased amount of liquids and are at a higher risk for dehydration. This need increases during the hot summer months and when a child is physically active. During hot sunny day children are also on open grounds playing or helping their parents on farms exposing themselves to more dehydration and severe pain episodes. Poor water resources in Tribal area is a major concern with water shortage as well as in some areas Ground water quality is adversely affected by nitrate contamination.

2) Staying protected from Extreme Heat and Dry Climate

A sudden change in body temperature can cause a child with sickle cell to have an acute pain episode. It is recommended that children with sickle cell should avoid becoming over-heated during the summer. In tribal areas poor housing infrastructure makes the living conditions all the more difficult with temperatures soaring to 40 + degrees C.

3)  Promoting a Healthy Lifestyle

Children with sickle cell need to eat a well-balanced and healthy diet rich in fruits, vegetables and whole grains. Children should also be encouraged to be physically active on a regular basis. A healthy body decreases the likelihood of a sickle cell pain episode or other infection.

In Dhadgaon and Chopda area tribal population is facing hardships in growing vegetables or procuring fresh fruits due to weather and financial conditions. Hence their diet is not so nutritionally rich and hence increasing chances of malnourishment and associated problems.

Life Story of a teenage girl taught us many ways to face these problems:

She is 15 year old sickle cell sufferer patient with parents and brother as sickle cell carriers. She was diagnosed with sickle cell anemia during a short hospital stay due to anemia in summer of 2009. Since then she is a regular visitor to Maharashtra Arogya Mandal's Sickle Cell Camps in Dhadgaon. Initially she suffered recurrent joint pains , weakness and associated infections especially in summer due to heat and water related problems.

During our regular counselling and treatment we identified major risk factors for her especially during extreme weather changes like summers and winters.

Now that she is aware she is taking her diet, medications and following health lifestyle.

We think that we must share some summer concerns with this platform to reach many others who might get affected during their time to enjoy and play in summer vacations.

If you think you can help a sickle cell patient to have memorable summer vacation help us to reach out to many more children.

We thank all the donors who made this extremely difficult journey comfortable with their calming love care and concern over the period of time.

We appreciate your support.

Have a health vacation ahead.

and Dont forget to help a sickle patient.

Until next time..

Dr Pranita Joshi Deshmukh

screening camp March 2019
screening camp March 2019
registration process
registration process

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Organization Information

Maharashtra Arogya Mandal

Location: Pune, Maharashtra - India
Website:
Anil Gujar
Project Leader:
Anil Gujar
Pune, Maharashtra India

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