Stand Up to Support the Sickle cell community

STAND UP TO SUPPORT THE SICKLERS

If you have ever visited the sickle cell Clinic at the National
Referral hospital Mulago or you have a son, daughter, relative, and a
friend who is suffering from the painful chronicle “monster” called
sickle cell anemia you know what I am writing about.
According to the research done twenty five thousand children are born
every year with Sickle cell in Uganda. Of the 25,000 children 75% of
them die before celebrating their 5th birthday.
The children who suffer from sickle cell are discriminated and
stigmatized in Uganda. If a woman gives birth to a sickler some
husbands run away from them. Others the family members chase them away
thinking that they have brought a curse to the family. Some people are
still having primitive ideas that sickle cell is witchcraft this drive
them to traditional healers for cure and sometimes they end up
claiming the lives of the innocent children.
Children who have sickle cell some are denied a chance to go to
schools with a view that they can’t live longer and will die soon and
paying the school fees is wastage of money and resources. This belief
is not true because sickler can live to over 50 years if they are
given care. According to the Uganda Sickle cell Association the
longest living sickler known is Mzeei Blasio Wamala who is 79 years
old.
However those who get a chance to go to schools are discriminated by
their fellow students who think that they are worthless and of no
importance. This is not true because we are also important, for me who
writes to you this letter am a student at Makerere University Business
School Nakawa in my First year.
The government and NGOs have not done enough to support the sicklers;
it’s only the Sickle cell Association of Uganda under the leadership
of Ms. Ruth Nankanja Mukiibi that has helped. It is now constructing a
Sickle cell Centre at Kawanda that will house a clinic and offices. I
hope it will save the sickler from poor treatment.
It is a shaming to say that the only clinic in Mulago is housed in the
ply wood building. The clinic cannot do blood testing and the National
Referral hospital which has to be referred to also refer to Ebenezer
clinic for testing.
I appeal to the government to construct a ward at least at every
Regional referral hospital and equip it with the necessary materials
and a permanent medical doctor

Sickle cell not Death warrant

SICKLE CELL IS NOT A DEATH WARRANT

By Ssebandeke Ashiraf

In Uganda about 30,000 children are born with sickle cell and about six million people are at a risk of giving birth to a child with sickle cell disease in Uganda.

It deeply saddens me that there are so many of us who still suffer in silence. I know what it's like you are all alone in the struggle to be well, maintain, manage, and cope with having sickle cell. I understand the constant battle to live 'normal', productive and uninterrupted life.

No gain without pain they always say. But this pain you had ever since you were a baby from six months up to now. Life is unfair, that's what you tell your heart but you still have the spirit, the spirit to continue with this painful life. No matter what always happen you smile and you are always happy.

Mothers have to go through suffering and feeling guilty of bringing to this world a sickler. They feel guiltier whenever they see their children in pain. No body expects to have a child with sickle cell but it is all God's making. Some families that do not support the mothers make them to feel guilty, this is stressful. But all along mothers most of the times find growth in their esteem and become strong caretakers and caregivers.

Everyday life with sickle cell there is unspoken risk, risk of the unknown, but because it's unknown is it okay? Why when people talk about some forms of treatments especially bone marrow transplant, we who know that there is a daily unspoken risk, make the known risk seem much worst than the unknown. The risk of bone marrow transplants is well known with its chemotherapy but the risks of living with sickle cell for the rest of your life are unknown. Why do we show support to the unknown but none to the start of the known?

Some sicklers at one point or another have felt guilty for not being able to do something, be some where or whatever the guilt may be. Now they start asking God questions like “Why me?” “Why don't I die?” Most sicklers do not want to be known but this only accelerates their suffering because they are exposed to situations that drive them into crisis. Questions like “Why do I carry a bottle of water?” Why do I have to carry a sweater?” Most think that carrying a sweater or a bottle of water or juice is a crime so in order to free themselves they leave them. But there are those who overcome this to be strong individuals.

At some point I should accept with this disease there is some form of guilt. I always ask myself “Should I wait others to do for me what I can do for myself?” My answer is always no and a big No. So sicklers, caretakers, parents embrace each other from the beginning and show there is no need to feel guilty. AIDS is embraced why not sickle cell?

We have failed because of the kind of messages we convey to the society about sickle cell disorders. The scientists and doctors are guiltier in the kind of information they spread about this disease. They spread messages of hopelessness. I remember reading a research report by a doctor about genetic disorders and sickle cell was the case study. Tears betrayed by brave eyes after reading their 'predictions of doom'. So sad the doctor was saying that a sickler cannot live beyond 16 years. What I felt that day was hopelessness but God strengthened me; nobody can read my life and give me a verdict of death because of their scientific wisdom.  

I am not saying that science is wrong but why make the society feel horror about sickle cell. I became lazy and hateful of my own life because I thought I would not live beyond 16 years but when I discovered I wasn't dying and that was fed to me about sickle cell was a lie I turned and became progressive and even with little drugs and doctors. And by His grace I will live even older than those that are 'normal'.

Feeling guilty is a product of our own thinking, we shall die like any other mankind at our appointed time. Feeling sorry and guilty is not the solution. Act the solution because everybody suffers and everybody dies. Sickle cell is not a death sentence and there is nothing to feel guilt of.