By Dr Pranita Joshi Deshmukh | Research Coordinator at MAM's PARAS
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.
Links:
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 can receive an email when this project posts a report. You can also subscribe for reports without donating.
