Health
 India
Project #8728

Help Sickle Cell Anaemia patients lead better life

by Maharashtra Arogya Mandal
Vetted

Sickle Cell Disease

Alarming Condition for Tribal Population in Maharashtra

Report by Maharashtra Arogya Mandal , Pune for July to September 2016

Sickle cell disease is an alarming reality in Maharashtra.MAM’s Sickle cell department is working towards prevention and therapeutics of sickle cell disease since 1990.

In Maharashtra, the sickle gene is widespread in all the eastern districts, also known as the Vidarbha region, in the Satpuda ranges in the north and in some parts of Marathawada. The prevalence of sickle cell carriers in different tribes varies from 0 to 35 per cent. The tribal groups with a high prevalence of HbS (20-35 %) include the Bhils, Madias, Pawaras, Pardhans and Otkars.(Indian J Med Res 141, May 2015, pp 509-515,Sickle cell disease in tribal populations in India,Roshan B. Colah, Malay B. Mukherjee, Snehal Martin & Kanjaksha Ghosh,National Institute of Immunohaematology (ICMR), Mumbai, India)

It has also been estimated that Gadchiroli, Chandrapur, Nagpur, Bhandara, yoetmal and Nandurbar districts would have more than 5000 cases of sickle cell anaemia.(Kate SL, Lingojwar DP. Epidemiology of sickle cell disorder in the state of Maharashtra. Indian J Hum Genet 2002; 3 : 161-7.)

Maharashtra Arogya Mandal conducted screening camps in the months of July 2016 and September 2016 at two satellite centers in Chopda and Dhadgaon. Summary of sickle cell Camp At sickle cell Dawakhana, Roshmal, Tal. Dhadgaon, Dist. Nandurbar is as follows

In July 2016 camp 907 patients were given free medicines and additionally 270 were screened and 73 new sickle cell patients detected as sufferers.

In September 2016 camp 1009 patients were benefited with free medicines additionally we have screened 445 new cases out of them 135 detected as sufferers.

We have noticed that in July and September many new cases were detected both with carrier (297) and sufferer (208) traits.

The number of sufferer cases detected was high in September 2016 camp. This may be a record in history of sickle cell camps conducted till date. We are making efforts to document this in National Records.

Probable reasons of increased cases in our screening camps may be highlighted as follows:

  • Increased awareness about the disease
  • Increased detection rate due to frequent diagnostic camps by Maharashtra Arogya Mandal and people’s trust in our services.
  • Mother to child transmission
  • Regular screening camps in affected areas in both satellite centers and people coming from more than 200 kms from peripheral tribal areas.

Retinopathy in Sickle Cell Patients:

This camp was specially focused on Retinopathy screening along with Sickle Cell Diagnosis and free treatment. Sickle cell trait (hemoglobin AS) is the most common genotype and has traditionally been considered a benign condition. Systemic and ocular complications are seen infrequently in patients with sickle cell trait. In the presence of concomitant systemic diseases or trauma, however, marked retinopathy can occur. The presence of retinopathy in patients with sickle cell trait necessitates a comprehensive medical workup, including serologic testing to rule out systemic conditions. (Retinopathy in patients with sickle cell trait. Reynolds SA1, Besada E, Winter-Corella C.,Optometry. 2007 Nov;78(11):582-7.)

During this camp Kalpataru Foundation Nashik conducted Eye checkup for Retinopathy Examination of sickle cell patients. Maharashtra Arogya Mandal with the help of Kalpataru foundation started new project to screen retinal problems in Sickle Cell patients. During September 2016 camp total 103 patients benefited with this special screening. Out of them 5 patients were detected with retinal changes and will be taken care from Kalpataru foundation.

This camp was successful in terms of detecting more number of patients and retinopathy special screening along with free medicines to all.

Support of Global giving platform proved very important and pivotal in implementing new projects. 

Links:

Maharashtra Arogya Mandal’s Sickle Cell Anaemia Project

Activity Report

   June-July-2016 

 

“Everybody is looking for validation, no matter who you are, and I think that's a need of the human condition - to look for affection or recognition or validation”.As quoted by Alejandro Gonzalez Inarritu, the famous Mexican film director, producer and screenwriter.

 

Maharashtra Arogya Mandal started work for Sickle Cell Anemia in 1990s without looking for credit, validation or support. On way towards unconditional service many mentors like Global Giving hold our hands to make us believe in our work. Their association with us not only provided consistent support but also recognition and validation on International platform.

 

This report is very special for us as it has first-hand information from Global Giving Intern Ms Priya Sadhu. We are thankful to Global giving to provide us an opportunity to present our work to first intern of global giving. Ms Priya visited our work site, guided us and provided us some effective communication aids for attaining comprehensive coverage on global giving. 

She visited Bhimashankar Tribal Development Project area at Sawarali. Tal Ambegaon Dist Pune. She also visited Muktangan free tribal girls hostel at Narodi Tal. Ambegaon Dist Pune.

 

We are thankful to all donors and well-wishers as with their kind support we were able to conduct 95th Sickle cell camp. Your support has made possible to avail diagnostic facilities for our new beneficiaries and 100% medicine supply rate for new and old sickle cell patients.

 

Our treatment camp is in July 2016 its monsoon in India with exposure to cold, rainy climate sickle cell patients suffer from joint pains. In this sickle cell camp we emphasize the sense of earnestness particularly for counselling, diagnosis and treatment for this medico-social problem of sickle cell disease along with seasonal precautions with care.

We have observed more patients from other states like Madhya Pradesh and Gujarat are benefitted by our services. Also tribal patients from the vicinity of Satpuda Hilly ranges i.e from areas like Chopda, Shirpur, Raver and other parts of Jalgaon district adjacent to Madhya Pradesh are in large number suffering from this problem.  

There was no centre providing comprehensive care for Sickle Cell Disorderin affected area.Hence we have started a new centre at Dr. Dada Gujar Sickle Cell Centre Chopda Dist. Jalgaon to serve more and more tribal population. We feel honoured that this was our second centre inaugurated by Dr. Graham Serjeant (International Sickle Cell Scientist Jamaica)

This centre also provides facilities like Diagnosis, Counselling and Possible treatment for Sickle Cell free of cost.

Kindly help us forward this appeal to family and friends to help spread the message “Your generous monsoon gift will help one patient to be treated every day for one month while attending his primary school.”

 Your donations will be utilized to buy blood testing machines, warm clothes and medicines to ensure every sickle cell tribal family is healthy.”

Remember each contribution makes a transformation, irrespective of magnitude. 

Sickle cell activities at glance

Dhadgaon Centre Total  Patients = 825+ 33= 858

Total Beneficiaries             961 including 136 new patients.

Sickle cell status:  A+A 36               A+S 66        S+S 33

 

Dr. Dada Gujar Sickle Cell Centre Chopda Dist. Jalgaon

Total Beneficiaries 90 + 34 = 124 including 34 new patients

Sickle cell status: A+A 13    A+S 11           S+S 10

 

19 June is observed as a world sickle cell awareness day by UNESCO hence during this week Maharashtra Arogya Mandal’ s Sickle Cell Department has conducted free screening camp from 19 June  to 25 June 2016 at Sane Guruji Hospital Hadapsar Pune.

Data of screening camp.

Total Population screened 219       AA  208          AS 7    SS 4

During this week on 21st June we had a an awareness program in which Dr. Anil Awachat  Social activist and famous writer in Pune was chief guest. Dr. S.L.Kate was president of the function in presence of Global Giving Intern Priya Sadhu . Sickle Cell Patients, Paediatrician from Khargon Dr. Hitesh Mujalde (Madhya Pradesh) were also present  on this occasion.

On this occasion the Sickle Cell Patient shared their views and benefits of the treatment of our polyherbal formulation and Sickle Cell Kit with counselling.

Sickle Cell Department also imparts training of Sickle Cell in areas of Laboratory Diagnosis, Counselling and Treatment.  During 20th June to 25th June 4 volunteers from tribal area working with a NGO Adivasi development initiative At Paulzola , Tal Deori Dist. Gondia Maharashtra took  hand on training for Laboratory Diagnosis for sickle cell under able guidance of Dr. S.L.Kate.

Famous Haemato-pathologist from Pune Dr. R. Manchanda was invited as a guest lecturer for the journal club meeting . Dr.Manchanda delivered lecture on inference reading and importance complete blood count parameters and Pre-Natal Diagnosis.

Please watch this video with activity photographs and other details.

Thanking you

Yours sincerely

Anil Gujar

Secretary

Maharashtra Arogya Mandal

Pune


Attachments:
Medical Check Up At Dhule
Medical Check Up At Dhule

Maharashtra Arogya Mandal (MAM) conducted free sickle cell health checkup and diagnostic camp from 23rd to 27th January 2016.

During the journey from Pune to Dhadgaon we had medical checkup and medicinal kit was given to our 10 old diagnosed sickle cell patients from Dhule and Jalgaon districts at Shankar Mandir, Dhule, Maharashtra.

On Sunday 24th January 2016, 421 old diagnosed sickle cell patients were clinically examined and were given free medications.

Also screening (blood testing) of new 122 tribal individuals was done among which 67 were diagnosed as carriers and 23patients were identified as sufferers. Advice and counseling regarding the dietary and behavioral regime was given to both old and new patients. The carriers were provided with counseling, emphasis was given on pre/ post marital guidance.  The 32individuals were diagnosed as normal (without sickle cell disease) were also guided for this socio-medical problem. 

On 25th January 2016 (Monday), 356 old patients were clinically examined and provided with free medications and 39 new tribal individuals were screened for sickle cell disease. In newly screened 12 patients were diagnosed as (diseased) sufferers and16 were diagnosed as carriers and 11 individuals were diagnosed as normal i.e. without sickle cell.

In these 5 -6 years we have observed that more than 350 patients from adjoining states of Madhya Pradesh and Jalgaon District visit our center. Every time the patient has to come along with his family. This was a costly affair for poor tribal sickle cell patients. Taking in to consideration we thought about establishing of similar center in nearby areas of Jalgaon and Madhya Pradesh.

To verify this we conducted free sickle cell screening camps on 14th and 15th February 2016 in Balwadi (M.P.), Vaijapur village( Jalgaon District). In this we found a high prevalence of sickle cell. During this screening program we screened 555 tribal individuals and found that 150 tribal were sickle cell carriers and 23 were sickle cell patients.

In this camp patients were given guidance and treatment with counseling. Also Carrier individuals were guided with counseling session.

In March a similar camp was conducted at Dhadgaon District Nandurbar on 26rd March to 28th March 2016.

During this camp International Sickle Cell Scientist Dr. Graham Serjeant M.D. (Medicine) Chairman Sickle Cell Trust Jamaica and Mrs. Beryl Serjeant visited our Centre. They guided us about the treatment. Also Dr. Graham Serjeant examined some critical cases.

On 27th March Dr. S.F.Patil (Former Vice Chanceller North Maharashtra University) and President of Maharashtra Arogya Mandal visited Sickle Cell Community Control Centre at Dhadgaon. On the next day 28th March 2016 we had a gathering of patients and offered a memory prayer on occasion of Death Anniversary of Founder Secretary Late Dr. Dada Gujar. We also distributed fruits of this occasion to sickle cell patients and relatives.

During this camp totally 923 tribal Individuals were benefitted. In two days camp we checked705 old patients and screened 218 tribal people. In this camp we found 53 sickle cell patients and 110 sickle cell carriers.

We offered services like counseling sessions, medical checkup and guidance free of cost in our program.

As our organization has a aim to serve the needy strata of the society and looking at the increasing number of patients from Madhya Pradesh (>350) we were planning to have a similar community control program center in adjoining of Jalgaon district and Madhya Pradesh.

Our Secretary planned to establish a similar center in nearby areas of Jalgaon. This planning was explained to all the committee members and Dr. Dada Gujar Sickle Cell Centre was established at Chopda Dist Jalgaon on 29th March 2016 .

This Centre was inaugurated by International Sickle Cell Scientist Dr. Graham Serjeant. During this occasion Maharashtra Arogya Mandal’s President Dr. S.F.Patil, Executive committee member Dr. Suresh Patil, Pediatrician Dr. Jayant Patil, Dr. Arun Mahajan, Dr. S.L.Kate (Head Sickle Cell Project) Dr. Jyotish Patel and Dr. Raosaheb Jadhav were present.

Also Doctors and sickle cell patients along with their relatives from the vicinity of Chopda Block Dist. Jalgaon Maharashtra (21.25 N and 75.3 E) were presented on this occasion. Dr. Premchand Mahajan (Pathologist) anchored the entire ceremony.

During the inauguration Dr. Graham Serjeant said “ Maharashtra Arogya Mandal is a medico-social organization which has always viewed the needs of tribal community, particularly health problems I wish this Centre will  also be a same community control program similar as Dhadgaon and will be useful for patients from nearby areas”.

A laboratory providing diagnostic facilities for sickle cell was inaugurated by Mrs Beryl Serjeant.

After this we had a diagnostic and treatment camp on 29 March 2016. In this totally 65 old patients were medically examined and treated, Also New 34 individuals screened in which we found 14 sickle cell patients and 9 sickle cell carriers.

We are thankful to all our donors who encouraged us to work for tribal health problems and support us through e-social media of global giving.

This is all because of your kind support and help.

Thanking You

Mr. Anil Gujar

Secretary

Maharashtra Arogya Mandal

Malwadi

Hadapsar

Pune-28

astgujar@gmail.com

Inauguration- New Centre @ Chopda
Inauguration- New Centre @ Chopda
Laboratory Inaugaration Mrs Beryl Serjeant
Laboratory Inaugaration Mrs Beryl Serjeant
Dr. Sergeant Guiding Sickle Cell Team
Dr. Sergeant Guiding Sickle Cell Team
Sickle Cell Camp Dhadgaon
Sickle Cell Camp Dhadgaon

Links:


Attachments:
CLINICAL EXAMINATION
CLINICAL EXAMINATION

Maharashtra Arogya Mandal’s Sickle Cell Dawakhana

Quarterly Activity report- 2015

Being Head of Sickle Cell Department and Emeritus Medical Scientist, I am very happy to write this activity report on behalf of our Project Director Mr Anil Gujar Secretary Maharashtra Arogya Mandal Hadapsar Pune-28.

We are thankful to all our donors and with their kind support we were able to conduct 92th    Sickle cell camp and serve the tribal community since 1998.  Your support has made possible to avail diagnostic facilities for our new beneficiaries and 100% medicine supply rate for new and old sickle cell patients.

 This featuring camp is in January 2016 i.e. in winter with exposure to cold climate sickle cell patients suffer from joint pains. In this condition when we are welcoming and enjoying the new year the tribal patients might be suffering from pain due to sickle cell disorder.

Please make a new year  gift so more children and sickle cell patients can leave normal life this year” with a big Donate button next to that call to action. In the sickle cell camp we reinforce the sense of urgency... for counselling, diagnosis and treatment for this medico-social problem of sickle cell disease.

For example pre-marital counselling, genetic counselling, affordable and accurate diagnosis and free supply of medicines to improve quality of life and reduce blood transfusions.

We have observed more patients from other states like Madhya Pradesh and Gujarat are benefitted by our services. It is because of your kind support.   “We are nearly to our goal of creating medico-social awareness in society”.

Also tribal patients from the vicinity of Satpuda Hilly ranges i.e from areas like Chopda, Shirpur, Raver and other parts of Jalgaon district adjacent to Madhya Pradesh are in large number suffering from this problem.

Hence we are planning to start a new centre at Chopda to serve more and more tribal population.

We are encouraged and helped by Global giving platform along with supporters like Cummins India Foundation, AWO Germany and Central Council for Research in Ayurveda and Siddha New Delhi along with socially oriented individual donors and organizations.

 In sickle cell disease pain is the destiny of sickle cell patients, as no full proof treatment is available. With the help of our herbal medicines, guidance to prevent pain with measures to improve quality of life they can face that pain with armour of hope.

People in tribal area are facing this disease as a part and parcel of their life. With our medical expertise and your financial aid we are just offering them a support to face these difficulties with patience.

Kindly help us forward this appeal to family and friends to help spread the message “Your generous gift will mean one patient to be treated every day for one month while attending his primary school, Your donations will help us buy blood testing machines, warm clothes and medicines to ensure every sickle cell tribal family is healthy.” Remember each contribution makes a transformation, irrespective of magnitude. 

 1)     At Dhadgaon where we organise our regular activities i.e. sickle cell camp for two days i.e.  29 and 30 November 2015.  After screening Tribal Population, Total 74 New patients were identified.  The total beneficiaries in this camp were   1131  (875  Old Patients  +256  New  beneficiaries =  Total 1131)  and were provided with accurate diagnostic facilities,  possible adequate medication and counselling.

2)     On 1/12/2015R.C Patel College of Pharmacy Shirpur Dhule had organised a seminar on various aspects of sickle cell.  Dr.S.L.Kate, Dr. Girish T Kulkarni and Dr.Yogesh S.Prabhune were the resources persons invited. Mr. Arun Gujar Dr.S.L.Kate Dr. Girish T Kulkarni, Dr.  C.D.Patil Dr. D.D.Patil Dr. S.J. Surana and other dignitaries had a meeting with chairman Shirpur Education Society Shirpur Dist. Dhule regarding the sickle cell disease in area.

We wish our donors and global giving team a very happy prosperous new year

Thank you in advance for your support.

 

Yours Sincerely,                                                            

Dr S L Kate                                                            Anil Gujar                                                    

Sickle cell Scientist                                              Project Director

Sickle cell Department                                  Maharashtra Arogya Mandal   

PATIENTS WAITING
PATIENTS WAITING
LAB WORK IN TRIBAL AREA
LAB WORK IN TRIBAL AREA
COUNSELLING AND FAMILY STUDIES
COUNSELLING AND FAMILY STUDIES

Attachments:
Clinical examination
Clinical examination

                              Maharashtra Arogya Mandal’s Sickle Cell Dawakhana

                               Roshmal Budruk Tal. Dhadgaon District Nandurbar 

                                           Activity report July to October 2015

 

Maharashtra Arogya Mandal’s Sickle Cell Department is thankful to all our donors as it is only because of their kind support we are today in a position to successfully conduct camps every two months. These camps were 90th and 91st Sickle cell camp respectively and will hit the century soon while serving the tribal community.  

We would like to highlight one small story of a Pizza…in India during Ganesh Puja Festivals…in a small middle class family.

Wife: Don’t put so many clothes for wash today. Husband: Why?

She said: Maid has said she won’t come for two days. Husband: Why?

Wife: She said she is going to meet her granddaughter during Ganesh Festival.

Husband: Ok will not put too many clothes. Wife: And Shall I give her Rs 500 as a Festival bonus? Husband: Why? Diwali is approaching, we will give her at that time..

Wife: Oh no dear. She is poor and going to meet her granddaughter, so she will also feel nice. Moreover, everything has become so expensive these days. How will she able to celebrate festival?

And to compensate our expenses I am going to cancel today’s program of ordering Pizza. Why unnecessary blow away Rs 500 on eight small pieces of stale bread. I will cook something special at home instead.

Husband: oh great you are indirectly snatching my Pizza and giving it to maid.

Maid returned after three days and got busy in her work.

Husband asked her about her vacation and how she spent her festival bonus?

Maid happily replied: Sir, Thank you for your generous bonus for my visit.

I bought dress for my granddaughter for Rs 150/-,Rs 40 for a doll, sweets worth Rs 50, Rs 50 for my medicines , Rs 60 for bus fare, Rs 25 for bangles that I gifted to my daughter, nice belt worth Rs 50 for my son in law. And remaining 75 Rs I kept with my daughter for her daughter’s school stationary.

Husband: started thinking…The eight pieces of Pizza appeared in front of his eyes. And each one of them acted as a hammer that started knocking on his consciousness. And today maid gave account of eight headings of her expenses as if she showed other side of Pizza.

She taught him real meaning of “Spending for Life” or “Life for Spending”

Remember each contribution makes a transformation, irrespective of amount but creates a big impact in lives of patients. We would really appreciate your help in future endeavours to serve our level best.

During July to October 2015, Global Giving platform supported diagnostic facilities for our new beneficiaries and 100% free medicine supply for new and old sickle cell patients.

Our next camps are in November and January i.e. in colder weather conditions which are troublesome for sickle cell patients as they face severe joint pain due to elevated RBC destruction.

 

When we all will celebrate Xmas and New Year with zest and warmth of our health and home with our loved ones, these tribal community patients will be fighting hard against battle of health and weather. Your simple X mas or New Year gift can bring smile on their faces along with warmth and peaceful festivities with good health.

 

We sincerely appeal for your generous X mas or year-end gift so as to give sickle cell children/patients, an opportunity to lead a comfortable winter and enjoy festivities with their family.

Our every camp ensures free supply of medications, expert advice/pre-marital counselling, and genetic counselling with affordable and accurate diagnosis. This camp is conducted with team of experts who always look upon ways to improve quality of life and reduce blood transfusions for this lifelong condition.

Our September 2015 camp recorded largest beneficiaries (1200) in 2015 year among which approximately 400 were children. We have facilitated and treated more patients from other states like Madhya Pradesh and Gujarat. We are encouraged and helped by Global Giving along with supporters like Cummins India Foundation, AWO Germany and Central Council for Research in Ayurveda and Siddha New Delhi Government of India along with socially oriented individual donors and organizations.

Sickle cell disease becomes identity of patient as there is no cure. Our organization is dedicated for wellbeing of tribal community and to provide them continuous supply of health care facilities specially warm clothes, hot water bags, affordable diagnosis at doorstep, and free medicines with social acceptability. We at Maharashtra Arogya Mandal are kin on preventive care with the help of genetic and pre-marital counselling, thereby reducing future load of disease on this vulnerable part of our society.

 

 

Our Activities:-  

At Dhadgaon (our field area) where we organised our regular activities i.e. sickle cell camp for two days i.e. on 25 to 27th July 2015.  After screening 188 tribal Population, Total New 41patients were identified.  The total beneficiaries in this camp were 965 and were provided with possible adequate medication and counselling.

On 7th August 2015 Dr.D.Y.Patil college of Pharmacy Pimpri Pune through its National Service Scheme had organised a lecture on various aspects of sickle cell. Dr.S.L.Kate, Dr. Prashant Dalvi, Dr. Girish Kulkarni and Dr.Yogesh S.Prabhune were the resources persons invited. Mr. Rohan Bhand assisted for demonstrations of Diagnostic Blood test for sickle cell.

From 26 to 29th September 2015 we have organised our 91st Sickle Cell Camp which recorded the largest number of beneficiaries (1200) of the year. After screening 321Tribal Population, Total New 80 patients were identified. All the patients were provided free medicines, Counselling. The rest i.e. (Carrier and Normal individuals) were also provided with counselling. Nutritious laddus and warm clothes were also distributed in this camp. 

Thank you in advance for your support!

 

Yours Sincerely,                                                            

Dr S L Kate                                                            Anil Gujar                                                    

Sickle cell Scientist                                              Project Director

Sickle cell Department                                  Maharashtra Arogya Mandal

Clinical examination (2)
Clinical examination (2)
Dr.S.L Kate councelling and family studies
Dr.S.L Kate councelling and family studies
Lab work
Lab work
waiting sickle cell patients
waiting sickle cell patients
Laboratory Work
Laboratory Work

Attachments:
 

About Project Reports

Project Reports on GlobalGiving are posted directly to globalgiving.org by Project Leaders as they are completed, generally every 3-4 months. To protect the integrity of these documents, GlobalGiving does not alter them; therefore you may find some language or formatting issues.

If you donate to this project or have donated to this project, you will get an e-mail when this project posts a report. You can also subscribe for reports via e-mail without donating.

Get Reports via Email

We'll only email you new reports and updates about this project.

Organization Information

Maharashtra Arogya Mandal

Location: Pune, Maharashtra - India
Website: http:/​/​www.ayurvedmampune.com/​
Project Leader:
Mr Anil S. Gujar
NGO working in Health, Education and Tribal Development since 1960
Pune, Maharashtra India
$4,902 raised of $35,000 goal
 
107 donations
$30,098 to go
Donate Now Add Project to Favorites

Help raise money for this important cause by creating a personalized fundraising page for this project.

Start a Fundraiser

Learn more about GlobalGiving

Teenage Science Students
Vetting +
Due Diligence

Snorkeler
Our
Impact

Woman Holding a Gift Card
Give
Gift Cards

Young Girl with a Bicycle
GlobalGiving
Guarantee

Sign up for the GlobalGiving Newsletter

WARNING: Javascript is currently disabled or is not available in your browser. GlobalGiving makes extensive use of Javascript and will not function properly with Javascript disabled. Please enable Javascript and refresh this page.