Help 100 Sickle Cell Anaemia Children in Uganda

COVID pandemic has changed the true sense of normal life all over the world, many things are beyond our control and trivial human capabilities. We also realised the power of family and friend, our own little safe shield of the community.

Pandemic showed us the mirror where an introspection was needed. We suffered, we learned and we kept going! the second lock down in Uganda has brought us its own set of challenges in Uganda like second wave, vaccinations, unsafe medicines and endless quest of oxygen/ventilator beds.

It’s said that “Resilience is accepting your new reality, even if it's less good than the one you had before. You can fight it, you can do nothing but scream about what you've lost, or you can accept that and try to put together something that's good”.

SCOEN tried its level best to continue the outreach activities for sickle cell patients. Due to the new surge in covid cases in Uganda; our team could not visit the local centre. However, we used tools of telemedicine, WhatsApp and got help from local volunteers in reaching out to patients.

We thought that our regular camps would continueunfortunately, new cases and lockdown guidelines did not allow us.

The sickle cell disease patients suffered all the more with limited healthcare access and no vaccination. Their regular medicines were also getting over and monitoring of sickle cell disease status was also on hold.

Some of the patients were tested positive for covid and faced major problems, some of them also needed hospitalisation. We supplied medicines via courier and post. Patients needing additional COVID specific counselling or treatment were contacted and guided to the nearest COVID centre.

Our virtual meeting with the help of local doctors / village representatives got overwhelming response. We planned all the activities remotely with their help.

The outreach activities were successful with total 153 beneficiaries reached, 23 received food, sanitation item in kind this includes, Miaze flour, egg and soap etc..

We rely on your kind donations to keep doing the work we do. Every donation allows us to reach more children, run more activities, and improve the lives of those living with sickle cell.

Please don’t forget to share this cause with your friend and family. We appreciated your generosity for every dollar you give, we know every penny counts. Making your donations today and your love go further!

4 children have received the HYDROXYUREA  for 2 months now and the medication have been effective to this children. We cant share their picture publically right because of child protection policies governing our activities.

 Thank you #StaySafe, #COVID19

SCOEN Team

Sickle Cell anaemia 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 anaemia is reduced substantially due to limited medical resources available for tribal population. This disease is common in tribal community thereby making it all the 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. 

SCOEN’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 anaemia.

We strongly feel that there is a Need to change the outlook towards patients of Sickle Cell Anaemia 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.

Within camps 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 councils who visited our camp and appreciated our work. He also offered his full support for sickle cell awareness drive and treatment.

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 anaemia 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 and support 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  

Your donations bringhope, love and bring smiles on the faces of sickle cell patients.

Please write to us for comments and for volunteering for fund raising activities.