"I can control my destiny, but not my fate. Destiny means there are opportunities to turn right or left, but fate is a one-way street. I believe we all have the choice as to whether we fulfil our destiny, but our fate is sealed."
This quote from Paulo Coelho reminds us about the painful destiny of Sickle Cell patients with a sealed fate of limited life.For sickle cell patient pain is not a choice anymore its their destiny.
Everyday they make choices which result in Do or Die literally !
In last 103 sickle cell camps over two decades; we have seen numerous sickle cell patients with painful conditions ranging from simple joint aches, pains and disability due to immense pain.Such Do or Die Choices start with conditions like Avascular Necrosis of Hip ( Femoral Head) of the bone which is an extremely painful and progressively disabling disorder. AVN if left untreated leads to hip arthritis, needing surgical intervention like surface replacement or total hip replacement, making a patient suffer more with such choices like "Do surgery or Die with pain". Tribal patient can not afford operations and treatments ranging over 6 lakh rupees.
Selecting an expensive surgery is always an impossible goal for tribals so accepting own's death becomes an easy choice.
We experienced this Do or Die scenario with a very dedicated and enthusiastic cheerful counsellor among our team who was a sickle cell patient herself.Arts graduate Anita came to our sickle cell centre in 2002 for treatment. With her own experience of sufferings she stared counselling to the sickle cell patients in bhill or tribal language. She was extremely nice in counselling. Her volunteering work with a caring smile made everything seem so easy.
One day she came to us and said that she had unbearable pain in pelvic region. She also requested us to refer her to good orthopaedic surgeon. The orthopaedic surgeon explained her about radiological findings. He also suggested to do operation of Avascular femoral head necrosis with expenditure about 6 lakhs.Her father being primary teacher was unable to spend this much amount.
Both Anita and her father came back to their village, Molgi, Dist Nandurbar, Maharashtra . She knew that this financial helplessness means accepting own untimely death.From this incidence she was so disappointed that she skipped her treatment and counselling services. After one year she join back with new hope of healing but her efforts went all in vain.
During the celebrations and preparations of Diwali In 2007 we got the most devastating news of her death. It was clearly due to lack of timely surgical care.
We would like to request you to join hands so that many such young bright and intelligent girls could be saved in future.
AVN needs intervention and this intervention needs your caring intentions. Please donate graciously to save future Anitas.
Let us pray that this Christmas season no child should make a choice between "Do or Die" .
Help us to spread the light of joy in lives of Sickle Cell Patients.
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Need to change the outlook towards patients of Sickle Cell Anemia
Sickle Cell anemia is a genetic disease with a power to change the identity of the patient. Carrier or Sufferer tag defines ‘how’ and ‘how long’ patient will live. The life expectancy of persons with sickle cell anemia is reduced substantially due to limited medical resources available for tribal population. This disease is common in tribal community thereby making it all the more worse due to lack of screening, diagnosis and right treatment. Some patients, however, can remain without symptoms for years, while others do not survive infancy or early childhood.
Maharashtra Arogya Mandal’s regular screening camps and treatment proved very fruitful in limiting the severity of this fatal disease. Most patients suffer pain crises, fatigue, liver/spleen related disturbances and progressive tissue and organ damage. Impaired growth and development is the painful emotional trauma that is endured by parents and children with sickle cell anemia.
We strongly feel that there is a Need to change the outlook towards patients of Sickle Cell Anemia in the society. Any change begins with us as an individual. There are many things which an individual can help to sickle cell patients. Changing attitude and outlook towards their requirements is just the beginning.
In the July and September camps of Sickle Cell Screening and treatment we distributed free sweaters and blankets to the needy. Cold weather triggers their pain and hence greater chance of sickling crisis.
During this camp we received a special appreciation as district collector of Nandurbar visited our camp and appreciated our work. He also offered his full support for sickle cell awareness drive and treatment.
Three major Sickle cell camps conducted as follows:
1. Camp was held at Dhadgaon on 30/07/2017 and 31/07/2017.
Dhadgaon Camp had Total beneficiaries - 1187 old patients for treatment + 282 new patients = 1469 out of these
AA 80, AS 131 and SS 71 diagnosed.
2. Sickle cell checking camp was organized in two ashramshalas (Residential schools for tribal children)
Ashramshala kodit Tal. Shirpur Dist. Dhule
and Ashramshala Mhasrul Tal. Shindkheda Dist. Dhule
Total 568 students were screened out of them AA 440, AS 122 and SS 5 were diagnosed.
3. Sickle Cell Anemia Screening Camp was conducted from 24/09 /2017 to 26/ 09/2017
Total beneficiaries in three days - 1064 + 345=1409 out of them
AA 106, AS155 and SS 84 were noted.
What you can do for Sickle Cell Patients:
1 Change your outlook towards sickle cell patients and their disease. Even though disease cannot be treated there are a whole lot of things which can be done for children and patients to let them enjoy their limited time.
2 Talk more about sickle cell anemia at social gatherings and media.
3 Make people and government aware about the need of help
4 Sickle Cell Patients are suffering with chronic problems however superficially they might sound normal for you. Be sympathetic towards their needs. Take care of them.
5 Donate sweaters, nutritional supplements or other regular medicines. Try to reduce their financial burden. Have donors in your contact list? Or you want to donate? Help them to find a cause for that donation.
6 Sponsor a child for education/medicines or for advanced treatment.
7 Sponsor a sickle cell family.
8 Volunteer for the awareness of this deadly disease.
9 Participate in Screening camps, treatment services.
We provide care and support to all those affected by Sickle Cell as well as other healthcare Support which include:
•Nutritional supplements for children with Sickle Cell
•Information resources
•Sickle Cell Advice and counselling
•We educate Professionals, and the Public through:
•Talks, seminars, and training
•Information literature
•Newsletters
•Our Web-site
Let us donate hope and love this Diwali and bring smiles on the faces of sickle cell patients.
Please write to us for comments and for volunteering for fund raising activities.
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A famous quote says “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.”
Sickle Cell disease is a mountain challenge for a tribal sufferer patient. Working in tribal hilly areas made a huge difference in sensitising medical and para medical team members to day to day challenges sickle cell patients face.
We celebrated World Sickle Cell Day on 19th June 2017 with interactive seminar for medical fraternity and free check up camps for screening of Sickle Cell disease.
Over two decades Maharashtra Arogya Mandal is working in tribal areas of Northern Maharashtra and conducting screening and treatment camps.
In May we have conducted 101st camp with more than 1273 screenings and treatment with 1096 Sufferer and 119 carrier patients.
This June screening camp was really filled with excitement, joy and satisfaction as our Emeritus Scientist and Department of Sickle cell Head at Maharashtra Arogya Mandal Dr Sudam Kate received prestigious ‘Sickle Cell Advocate of the Year 2017’ (SCAY) award for his excellent work and dedication towards sickle cell anaemia from Sickle Cell 101 California USA based organisation. The SCAY Awards recognises devoted sickle cell advocates who have made invaluable contributions for the sickle cell community.
Dr Kate was busy with 101st camp when the Sickle Cell 101 award got declared.
This itself proved continuos dedication towards the life’s mission for Dr Kate.
This award comprises of $500 Cash Prize with Award plaque and Feature on Sickle Cell 101’s Social media accounts, Website and Online Newsletter.
Dr. Kate plays an instrumental role at the Maharashtra Arogya Mandal (MAM) in Pune, an Ayurvedic medical college. This center caters to the needs of tribal people in rural areas and has launched the Sickle Cell Anaemia Project. MAM provides a team of devoted medical staff and has screen 25 villages for sickle cell disorder and other health problems.
A true pioneer for sickle cell advocacy, Dr. Sudam L. Kate has dedicated a total of 36 years of his life to sickle cell in India. Dr. Kate has an extensive list of accomplishments regarding his work in research and patient care.
His journey began in 1972 when a team of Russian anthropologists visited India with the aim to study genetic markers among tribal population groups from Maharashtra and selected the Pawara tribal groups from Sahada taluka of the Dhule district. Dr. Kate was selected as a member from the BJ Medical College and given the responsibility of studying genetic markers and genetic surveying among 20 different population groups, particularly in tribal and scheduled caste populations.
While screening the Pawara tribal community for blood markers, he came across with few sickle cell trait carriers and one patient with sickle cell disease. This was a new and first finding within that area. He presented his data to his mentor Prof G S Mutalik who suggested him to continue this project work.
Throughout the course of his career, Dr. Kate remained active within the sickle cell community continuing his study on genetic disorders, organising national symposiums on tribal healths, and organising health camps in tribal areas of Maharashtra.
In 1998, Dr. Kate established Sickle Cell Dawakhana, a sickle cell centre that provided diagnoses, counselling and Ayurvedic treatment. Till date there have been 3204 patients diagnosed under the centre's medical supervision.
Sickle cell Community Healthcare is now synonymous with Maharashtra Arogya Mandal. This work is getting internationally reclaimed because of torch bearers like founder member Late Dr Dada Gujar, Sickle Cell Scientist Dr Kate and Organisation Secretary Mr Anil Gujar with a path setting visionary approach.
We are hopeful that GlobalGiving Platform will help us to reach to maximum social radius and fulfil our ambitious dream of setting up ‘centre of excellence’ at tribal village with objective to screen and diagnose sickle cell patients and provide them Ayurveda centric holistic care.
Please take a look at Sickle cell Day presentation of Dr Kate delivered on 19th June 2017 in intellectual gathering of all the medical fraternity and sickle cell patients.
We wish that global society gets aware about this disease and work towards eradication which is the aim of International Sickle Cell Day celebrations.
With gratitude and regards
Anil Gujar
Secretary
Maharashtra Arogya Mandal
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As quoted by Vince Lombardi, "The price of success is hard work, dedication to the job at hand, and the determination that whether we win or lose, we have applied the best of ourselves to the task at hand."
We consider our healthcare work of more than a decade with 100 successful camps as great success and achievement to motivate us to keep going.
Sickle cell disease (SCD) is found in many parts of the world, however common in Europe, United States of America, Middle east and Asia. The inherited disorders of hemoglobin is an emerging global health burden.
SCD in India is mostly found in central part of India and confined to low socio-economic groups namely scheduled castes (SC) scheduled tribes (ST) and other backward communities (OBC). Tribal population groups are more affected. Our organisation Mahrashtra Arogya Mandal(MAM) is working in Satpuda hilly ranges (21.5N, 75E) since last 18 years and have established community control programme center for local tribal groups Bhill and Pawra. We have screened more than 200000 tribal people from this area for sickle cell disorder and now there are more than 3500 sickle cell patient under medical supervision (sickle cell carrier 22.5% and sickle cell sufferer 1.25 %). We provide diagnosis, treatment and counseling facilities free of charge.
Our Extraordinary Finding: Tribal Family of 10 children, 8 sufferers (homozygotes) and 2 carriers (heterozygotes)
In order to find out genotype-phenotype correlation, we extended our screening program towards family studies of index patients. In this study programme, we came across one tribal family where parents are carriers having 10 children, 8 sufferers (homozygotes) and 2 carriers (heterozygotes). All were clinically stable and do not require any transfusion support.All the cases were anaemic with low MCV and were clinically stable without any transfusion support. Mutations analysis was done in five cases. Alpha gene deletion was found in all five cases , which is known for a milder phenotypic presentation.As far as we know this is the large family of 8 homozygous SCD patients and is the largest family in world literature. Dr GR Serjeant, well known scientist in sickle cell anemia field from Jamaica has seen 7 children in one family (as personal communication). Our data also suggest that SCD is more common in this part, which need further is depth studies to have proper intervention.
Now Consider this Statistics for 100 Camps till date:
This work demands extensive support from all over the globe to make it self sustainable.
If you find this intersting please join us and help tribal people with deadly disease of sickle cell anemia.
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“Acceptance of what has happened is the first step to overcoming the consequences of any misfortune.” as quoted by William James states the exact suffering of the sickle cell positive patients...Career or sufferer Sickle Cell anemia is their new identity...Every day, in their short unpredictable life, is a new challenge...they need to accept this misfortune on a daily basis ...on a situational basis.
Maharashtra Arogya Mandal is fighting with this deadly disease since a couple of decades now. Every screening camp teaches us a new thing which ultimately leads to accepting the harsh reality that we have limited resources and time to fight this misfortune....the only ray of hope is our effort cumulative of three major steps ...first is diagnosis at right time...second preventing disease spread in the next generation by marriage councelling and free palliative medications with potent herbal drug along with other suppliments.
During 26 to 29 November 2016 we have conducted two major diagnostic camps at Dhadgaon and Chopda centers...where we have screened 287 new patients out of them 122 (AS) were carrier and 77 (SS)sufferer cases..helped with concerned medicines and counselling and 86 (AA)patients were normal.
During this camp 1065 old patients got free medication for two months, dietary advice and other medicinal suppliments after thorough clinical check up.
During December we have undertaken three major camps for A+A Normal A+S Carrier S+S Sufferer stages of the disease among tribal population from 27 December to 29 December 2016...in Maharashtra and Madhya Pradesh tribal belts.
1. At Devzaari Aashramshaala,Chopda, Jalagaon district , Maharashtra center, total 289 tribals were screened with 226 AA Normal , 60 AS Carrier and 03 SS Sufferer pattern patients.
2. At Dhavli village, Taluka Varala, Bidvani district , Madhya Pradesh total 191 tribals were screened , with 143 AA , 42 AS and 06 SS pattern patients.
3. At Gerughati , Varala, Bidvani district , Madhya Pradesh total 322 new screenings were done with 253 AA,60 AS and 09 SS pattern patients.
These three camps proved successful with a total screening output of 802 tribal people..with 622 AA normal , but with 162 AS carriers and 18 SS positive patients for sickle cell disease.
This means we need to focus 162 carrier and 18 sufferer patients of the sickle cell disease in subsequent camps.
The Action Plan for the disease is as follows
This struggle of Maharashtra Arogya Mandal is well supported by many helping hands of donors on Global Giving platform.
We appreciate your generous support and in this festive season we hope that you will definitely bring light in the lives of tribal people succumbed to the dark and harsh reality of sickle cell disease.
On behalf of Maharashtra Arogya Mandal we wish you a happy and prosperous new year.
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