Project Completion Report of Sickle Cell Camp

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July 5, 2023, Dang Ghorahi: Rural Women Development Center -RWDC- has submitted the final completion report of sickle cell camp held in Dang district.  The camp was funded by American Met life Insurance and implemented by RWDC.

The following is the complete narrative of the sickle cell camp starting from the preparatory activities including stakeholders meetings etc.

Activity 1: Stakeholders Coordination Meeting for Sickle Cell Camp

 Rural Women Development Center -RWDC (Gramin Mahila Utthan Kendra) organized its first preparatory activity of Stakeholders coordination meeting on June 1, 2023, prior to holding Sickle Cell Camp in Dang Ghorahi Sub metropolis ward no 10 Narayanpur scheduled for 17 June 2023.

The stakeholders meeting was organized under the chairmanship of RWDC chairperson Aasmani Chaudhary and Ghorahi Sub Metropolis Mayor Naru Lal Chaudhary as the chief guest. The ward chairperson of Ghorahi Sub Metropolis -10 Narayanpur Deepak Pandey was the special guest on the occasion.

The stakeholders coordination meeting was attended by a total of 15 persons. The meeting also assigned various responsibilities to various persons for the sickle cell camp to be held including the fixation of date for the camp and venue for the camp. Ghorahi Sub Metropolis mayor Naru Lal Chaudhary commented that this sickle cell camp should be organized with positive note as it is a crucial issue among the Tharu community.

Participants of district stakeholders coordination meeting

Activity 2: Orientations on Sickle cell to social leaders, Guruwas, Jhakris and priests

The ward chairman of Ghorahi Sub Metropolis-Narayanpur ward no 10, Deepak Pandey called upon all his residents to take part in the upcoming free Sickle Cell camp on June 17, 2023 which is being organized by Rural Women Development Center-RWDC (Gramin Mahila Utthan Kendra) in coordination with ward no 10, Narayanpur. Pandey said so during a program held at Narayanpur on 10 June 2023 by RWDC.

The program was focused on one day Sickle cell related orientation to social leaders, tole bikas chairs, Guruwa, mahatawa Dhami, Jhankri, priests, pastor, local representatives and teachers. Pandey was the chief guest on this occasion.

The slide presentations related to orientation on Sickle cell were delivered by acting chief of Dang district health office, Dambar Bahadur Kunwar and Sickle cell focal person Devi Lal Dangi. A total of 56 participants participated in the one day orientation program which included 43 male and 13 females representing 29 janjati, 26 Brahmin Chetry and one dalit.

Anyone in the age group of 15 to 25 years could attend this sickle cell camp and other community people of any age suffering from or showing the symptoms of sickle cell such as body ache, recurring jaundice, joint pains, stomach ache are invited to the free sickle cell camp to be held in Narayanpur at ward no 10, health post premises on June 17, 2023.

The instructors focused on what is sickle cell disease? How it is transmitted? How to take precautions against this disease? The situation of sickle cell, treatment according to the symptoms, symptoms of sickle cell and finally about the suggestions and counselling to be given to the patients of sickle cell disease with top confidence were discussed in the orientations. The orientation also discussed about the conditions and situations of Sickle cell patients capable of marrying one another and pairs able to marry but not suggested to beget offspring. The main slogan of the orientation was “Prevention is better than cure.”

The orientation program was presided over by RWDC chairperson Aasmani Chaudhary while the program was facilitated by Prabati Basnet and organizational introductory presentations were given by HB Thapa.

Activity 3: Orientation on Sickle Cell to Female community Health Volunteers (FCHV) and Mothers Groups

Similarly, on June 11, 2023, the RWDC in close coordination with ward no 10 Narayanpur organized a one day orientation on sickle cells for Female Community Health Volunteers (FCHV) and mothers groups.

A total of 55 FCHVs including senior health and health technicians of Narayanpur health post attended this one day orientations on sickle cell with 46 females and 9 males including 26 Janjati 28 Brahmin Chetries and one dalit. The orientations were provided by acting chief of Dang district health office Dambar Bahadur Kunwar and Sickle cell Focal Person Devi Lal Dangi of Dang district health office.

The Narayanpur health office in charge Dilli Raj Acharya also spoke about the significance of holding Sickle cell camp for the targeted community. The welcome speech was given by RWDC treasurer Meera Chaudhary, while the organization background introduction through slides presentation was undertaken by HB Thapa.

Both the health trainers of orientation program said that the Sickle cell is not a communicable disease. It is a genetic disease which is transmitted from parents to the children.

The Sickle cell is found in two situations. One type of sickle cell is Sickle cell trait which is found in human body but does not show any symptoms of sickle cell disease. The other type is Sickle cell disease which is usually transmitted to new born babies through their parents genetically.

The trainers also said the sickle cell is sickle shaped red blood cells which are not able to supply oxygen to all parts of the human body which is why the person having this sickle cell disease develops various pains in the body. The round shaped red blood cell are good for human body as they are able to flow inside the arteries and veins without any barrier and can carry oxygen to various parts of the body. But sickle cells are not able to carry oxygen to various parts of the body regularly. Sickle cells die in around 15 to 20 days while round blood cells die in around 120 days.

The sickle cell can be identified through two methods, either through screening test or through haemoglobin electrophrosis. Screening can show whether the person is sickle cell positive or negative, but it cannot identify whether the sickle cell is trait type or disease type.

Although, Sickle cell disease has been identified to dominantly prevalent in Tharu community, yet other communities have also started manifesting this dangerous genetic disease. The orientation deliverance also highlighted that the sickle cell disease is not a curable disease. It can only be limited through right medications such as taking Folic acid and other pain killing medicines. The pain of sickle cell patient is considered to be 10 times more than that of labour pain.

The instructors during the two days orientations said that the sickle cell disease can be cured only if the whole bone barrow is changed which is not possible and if done could be very costly as well.

Activity 4: A total of 412 people attended Sickle cell camp  and 41 positive cases identified

Gramin Mahila Utthan Kendra (Rural Women Development Centre-RWDC with financial assistance  of American Met life Insurance and under the close coordination of District Health office Dang and health office of Ghorahi Sub Metropolis ward no 10, Narayanpur organized a one day free Sickling Test for Sickle Cell Anaemia on June 17, 2023.

The free Sickle Cell Anaemia camp was attended by team members of American Met Life led by Assistant Chief and international distribution officer Arun Basnet. The camp which began at around 8 was formally inaugurated by Mayor of Ghorahi Sub Metropolis Naru Lal Chaudhary as the chief guest of the occasion while Met Life’s Assistant Chief Arun Basnet was the special guest on the occasion. The inaugural program was presided by RWDC chairperson Aasmani Chaudhary. Present on the occasion were senior staff of Dang district health office and ward no 10 health post officials.

Speaking during the inaugural function, the chief guest and Mayor Naru Lal Chaudhary committed to allocate the local government budget for the procurement of machine and place it at Rapti Health Academy so that those willing to check their health for sickle cell anemia could get the services in future. He also said that since Sickle cell anemia is a genetic and dangerous disease especially among the Tharu community. There is need to identity this disease in most of the suspected people. He also added, “We cannot think of prosperity and development without the healthy citizens. There is no vaccination against the Sickle Cell Anemia. So, only getting checked and identifying this disease in time well in advance is the only way forward for all to prevent it. The Mayor also focused that awareness against Sickle cell anemia also should be spread as fast as possible.

Similarly, speaking during the same program, Narayan Gharti who is chief of health department of Ghorahi Sub Metropolis said that Sickle cell anemia could be prevented from spreading genetically if we would identify it before the marriage time in couples.

He also said that since the children inflicted with Sickle cell anemia disease cannot study and grow well in life, the government and concerned bodies should be very serious about this disease which is spreading like a wild fire with the societies. “It can not only decimate a community but also harm the whole society and nation in the long run. So we should be very serious about this disease, “he added.

Speaking during the same program, Meti life Assistant Chief Arun Basnet said that he was very pleased to see so many of people specially from Tharu community attending the camp and would expect to hold such camps in future too.

Speaking during the same program, the Narayanpur ward 10 health post chief Dilli Raj Achary said that RWDC has accomplished the Sickle Cell Anaemia Sickling test which even government has not been able to do. He also suggested that RWDC in future could also focus on running similar camps for the mentally and psychologically broken people which would be very appreciable act. He also thanked RWDC for giving the health post this opportunity to provide this unique type of services about sickle cell anaemia test freely to the citizens who really needed these services.

The concluding remarks of inaugural function were given by RWDC Chairperson Aasmani Chaudhary who thanked all concerned stakeholders including the Mayor of Ghorahi Sub Metropolis, Met life, health volunteers, mothers groups and the whole staff engaged in conducting the camp.

The total of participants who attended this camp was 412 of which 329 were females and 83 were males. Of the total 412 people tested for sickling test, a total of 41 persons have positive results for Sickle cell anemia. The 41 positive cases were sent to regional hospital Tulsipur for further process of testing.

Though the camp was expected to bring around 300 persons for sickle cell test, more than 400 people arrived of which remaining people beyond 412 were asked to return for next sickle cell camp to be held in future.

Activity 5: Post Sickle Cell Camp Counselling Session

Post sickle Cell camp counselling was organized for the 41 sickle cell anaemia persons on June 30, 2023 at Hotel City Plaza in Ghorahi-15. The counselling session was chaired by RWDC chairperson Aasmani Chaudhary and Deepak Pandey of Ghorahi Sub Metropolis ward no 10 chairperson was the chief guest on the occasion. The counselling session was conducted by Ujwal Poudel a senior lab technicians related to sickle cell and Dang district health office staff and Dilli Raj Acharya of Naranpur health office. Naryan Gharti the chief of Health department of Ghorahi Sub Metropolis also was present on the occasion.

During the counselling session, Ujwal Poudel told the sickle cell positive persons that they will now get free medicines up to Rs 100000 from the government hospitals such as Rapti Academy Hospital situated in Ghorahi. They just have to bring recommendation letter from their respective ward offices and additional recommendation letters from the Ghorhai Sub Metropolis department of health.

All 41 sickle cell persons who are from Tharu community will be given identity cards from the local government which they can show at the government offices to avail of the available assistance from the government.

The medical reports of all 41 sickle cell positive persons revealed that most of  them have sickle cell trait which does not spread to another generation if precautions are taken carefully during marriage time. That is a sickle cell trait person should avoid marrying with some one who is another sickle cell trait person. Of the 41 sickle cell positive persons only 6 of them are suffering from the sickle cell anemia disease and should be very careful about their health said Poudel.

Details of 41 positive cases of sickle cell  anemia

Lessons learnt

• Coordination with various health related stakeholders is essential to conduct sickle cell camp
• The preparedness for chemical and medical tool kits for sickle cell screening should be prepared well in advance by predicting the number of possible visitors for the camp
• Holding sickle cell camp is not easy one. The screening test of blood from people can only identify the positive cases and not the exact cases of sickle cell trait and sickle cell disease or Thalesemia cases specifically. For this purpose the sickle cell blood testing machine is required which is available at regional Tulsipur hospital

Major Challenges

• It was a challenging to find out the exact venue for the sickle cell camp. However, close coordination with relevant stakeholders mitigated this
• When conducting a sickle cell camp, the number of people visiting the camp cannot be forecasted. The number of people may exceed while conducting the

Major Recommendations

• Similar sickle cell camps are required in Dang, Banke and Bardia districts where Tharu community population is in high
• Though, sickle cell camp was conducted at Narayanpur ward no 10 and we identified 41 positive cases, many of the people were returned as the camp could not accommodate on that day. It is assumed that at least 1000 of the people from this ward no 10 Naryanpur could be living with sickle cell anaemia disease or trait without getting their blood test which is a big challenge to the survival of the whole population of that area. So it is strongly recommended to hold several other sickle cell camps in the same area to make all such suspected
• The children, women and youths out of the 41 positive cases also need life skill for livelihood, educational and counselling supports in
• The future programs need to create and raise awareness about sickle cell in schools, colleges and vulnerable community and other communities as most of the people suffering from this sickle cell and thalassemia disease and try not to expose, express themselves in front of the people.

The following media links reported about the sickle cell camp held on June 17, 2023.

https://fb.watch/ley4IOUl55/?mibextid=v7YzmG

also see this news link for details

https://gorkhapatraonline.com/news/68033?fbclid=IwAR15X98oBRAQoH1Wdqcuu0EHOf- JtbqvlAm6RZBRZok2elzCt0dC7Hl-ZXw

Also see this news link from Himalkhabar

https://www.himalkhabar.com/news/136478?fbclid=IwAR1- DpdIYXfuFmVtRwtxPXP4eYlLC8CQBqGtXlg6r6ZAQwu8E4ayg5CJ5mc

Also read see this link for sickle cell camp https://www.facebook.com/watch/?v=277175784973137

Also read the link from Agrasan

https://agrasankhabar.com/2023/06/5092/?fbclid=IwAR3p2C6vyh39mzjSh_CohDJlZAHqbLytjpK8uEK AgOy8SHfMHyWvI0hX2Ps

Also read this link from Ghorahi Sub Metropolis facebook

https://m.facebook.com/story.php?story_fbid=pfbid0HNrvAGzdd1ERdJVU2KFLtiTRdFExCVCNCFDwf UxHAtA3UG4za2V1v6Ndv8J3QBkRl&id=100027219873495&mibextid=Nif5oz