AT LAST!!! A CURE FOR PEOPLE WITH SICKLE CELL DISORDER:



                                                                  

                           Bone Marrow Transplant in process 

                                                     

QUESTION: Is there a CURE for SICKLE CELL ANAEMIA (Haemoglobin SS)?

ANSWER: YES, there is a cure for sickle cell in the form of Bone Marrow Transplantation (BMT). BMT for sickle cell has been around since the late 1980’s - although still not widely available.

WHAT YOU SHOULD KNOW ABOUT BONE MARROW TRANSPLANTATION (BMT):

1.     WHAT IS BMT? BMT for sickle cell is a procedure whereby cells from the bone marrow of a donor (ie someone who is Haemoglobin AA or AS) are transplanted into someone with Haemoglobin SS

2.    WHERE DO THE DONATED CELLS COME FROM?: Bone marrow cells are usually taken from the hip bone of the donor – who must have either Haemoglobin AA or AS. Usually, a brother or sister of the patient is preferred.

3.    BEFORE BMT CAN PROCEED, 3 MAJOR REQUIREMENTS MUST BE MET:

                                          i.    Identify the best donor (ie best match for the patient). Blood tests will determine who the best match is.

                                        ii.    Next, both the donor and the patient will have pre-transplant evaluations of the heart, lungs, kidney, etc.

                                       iii.    Counseling and interviews with a psychologist and a social worker also are an important part of the process.

4.    BMT must be done under sterile conditions and the recipient will be on admission in hospital for about 10 days before the transplant procedure and for up to 1 month after the procedure

5.    The actual BMT procedure is in the form of transfusion (just like the usual blood transfusion); the donated bone marrow is in a blood bag and passed into the patient’s body through a vein over a few hours.

6.    After the transfusion, the patient is monitored in hospital (on admission) over the period of about 1 month – under sterile conditions because they are vulnerable to infections at this time

7.    The patient continues to be monitored after discharge for several months to be sure the marrow has “taken”. 

8.    THE PATIENT IS CURED BECAUSE:

a.    They no longer have sickle cell crises and other symptoms of sickle cell

b.    They begin to live life normally like people who are Hb AA or AS – without frequent visits to the hospital, etc

c.    After the BMT procedure, when their genotype is checked by a blood test, they are found to have become Hb AA or AS – depending on the genotype of their donor.

9.    IMPORTANT!: Although the patient is cured - as evidenced by cessation of crises and other symptoms of sickle cell, as well blood test showing a change in their genotype, they need to be aware that they can still pass the Sickle Cell gene (S gene) to their children. This is important.

10.  BMT IS NOT RECOMMENDED FOR EVERYONE WITH SICKLE CELL:

a.    BMT is associated with risks and sometimes serious complications

b.    The doctors who carry out the procedure insist that a number of criteria are met

c.    The doctors will often consider the severity of the patient’s sickle cell condition vis a vis the risks of the procedure, before recommending it

11.  BMT IS EXPENSIVE: Most people travel abroad for the procedure and total cost of the procedure, air travel, food and board for about 6 months for patient and care giver add up to about a whopping N25m (twenty-five million Naira) per patient!

SICKLE CELL FOUNDATION NIGERIA OFFERS BONE MARROW TRANSPLANTATION (BMT)

For the past 4 years, 45 persons have benefited from the Sickle Cell Foundation Nigeria BMT Project. In collaboration with IME Rome, these 45 persons with sickle cell anaemia received BMT in Rome and are all cured today. The arrangement with IME Rome is for TECHNOLOGY TRANSFER, so the good news is that by the first quarter of 2016, BMT will be done here locally by the Foundation in collaboration with Lagos University Teaching Hospital (LUTH). Doctors and nurses have already gone for the necessary training in Rome.

Once we begin to provide BMT locally as stated above, the cost of the procedure will be a lot less and more Nigerians will be able to access it. The cost can be brought down to N5m per patient.

BMT IN UNIVERSITY OF BENIN TEACHING HOSPITAL (UBTH)

Dr. Bazuaye of UBTH has also performed about 3 BMTs for sickle cell successfully over the past 3 years at the teaching Hospital. Sickle Cell Foundation Nigeria and LUTH plan to work together with the Benin Team for the benefit of Nigerians with Sickle Cell.

SICKLE CELL DISORDER: EARLY DETECTION THE BEST SOLUTION.

 

 



Dr. Adeyemo Titi (Consultant Haematologist, Lagos University Teaching Hospital).

One of the disciples of Jesus Christ named Judas, saw Mary lavishing an expensive perfume on Jesus, and he said to Jesus, that the perfume should have been sold and the money given to the poor. Jesus’ response was that, we will always have the poor amongst us.

The same thing goes with people with Sickle Cell Disorder. We will always have them amongst us, but the quality of the lives they live or how long they live depends on how early their genotypes are detected.

At a workshop organised by Sickle Cell Foundation Nigeria in commemoration of The 2015 WORLD SICKLE CELL DAY held on June 11, 2015 at the National Sickle Cell Centre in Lagos Nigeria, Dr. Adeyemo Titi a Senior Lecturer/Consultant haematologist, Lagos University Teaching Hospital made it known that the best way to make people who have the Sickle Cell Disorder live a normal life is for their parents to get their children tested as babies.

According to her, when their genes are known very early in life, their parents will start managing them from that tender age by giving them the prescribed drugs and vaccines recommended for them by medical experts.

As soon as this is done, Dr. Adeyemo disclosed that people with SCD will not experience the crisis that people with SCD who did not particularly get to know about their status early, usually encounter.

When asked by one of the participants in the workshop, that when should women who live with SCD marry? Since it is believed that death can come at anytime, the response of Dr. Adeyemo still remained that if detected early and managed well, people living with the disorder can live as long as those without the disorder.

But, one thing is key, early detection and proper maintainance.

Mrs. Ayo Otaigbe, director Sickle Cell Foundation Nigeria, testified to what Dr. Adeyemo talked about early detection and maintainance for people living with Sickle Cell Disorder. She cited several examples of people whose parents got their children tested as babies and whose parents managed the disorder well. According to Mrs. Otigbe, those children are now doing well in their chosen careers. Some of them are even married. She also sounded a warning to parents, that teachers of their children should be aware of the disorder.

By doing so, Mrs.Otaigbe noted that some certain measures would be taken by the teachers to protect the children.She said that when school teachers are aware of the disoder, if it rains and other children are playing in the rain, the school or class teacher who has been briefed about a child with the disorder will obviously not allow the child to play in the rain because cold negatively affects them. As a genetic counsellor, she said she always advises parents during raining season to buy for their children with SCD, a rain coat, rain boot and umbrella because people with SCD are usually allegic to cold.

Mary Alale-Yusuf a health correspondent with Channels Television also gave two testimonies of those she knows living positively with SCD. One is a fifty-five year old woman and another is her nephew who will be graduating from the university very soon.

The fear that people with SCD will die young (21) should be erased from our minds. If people with the disorder are properly managed, they live as long as people without the disorder, she(Dr. Adeyemo) emphasied. She also gave an example of an eight-five year old woman living with Sickle Cell Disorder which really proves that there’s quality life for those living with Sickle Cell Disorder.

Dr. Annette Akinsete, National Director/Chief Executve Officer Sickle Cell Foundation Nigeria, also broke the goodnews that Lagos University Teaching Hospital at Idi-araba Lagos Nigeria is working on Ward E7 which will be used for Bone Marrow Transplant. According to her, the project will be completed at the end of 2015. The Foundation has in the past worked with an Italian Organisation and they have successfully sent forty-five Nigerians abroad for Bone Marrow Transplant. The forty-five people according to her are now living normal lives.

With LUTH completing the ward E7 by the end of 2015, more people will have the opportunity for the Bone Marrow Transplant which serves as a cure for people living with the disorder.Though that does not mean their genes will change.

 

 

Mrs. Ayo Otaigbe (Expert Genetic Counsellor Sickle Cell Foundation Nigeria).