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For Immediate Release                                                                                 June 29, 2020

 

Press Release

Children Below 12 With Sickle Cell Disorder Can Live Normal Life

– Dr. David Ajibade

 

A medical expert, Dr. David Ajibade says children below the age of 12 with sickle cell disorder can live an almost normal life if proper care is instituted early enough for them, based on improved knowledge of how to manage the condition. Ajibade, who is the Executive Director of Brain & Body Foundation (BBF), made this assertion during a virtual interactive session themed: Breaking The Cycle of Pain.

 

The meeting was organized by BBF in collaboration with the Nigerians In Diaspora Organisation (NIDO), Washington, D.C. Chapter and supported by the Nigeria Federal Ministry of Health. Participants were drawn from within and outside Nigeria. It was a part of the activities commemorating the 2020 World Sickle Cell Day (WSCD).

 

Also, a medical outreach for sickle cell patients was organized in Abuja on WSCD by BBF. The Office of the First Lady to the Federation was represented by Dr. Wole Aboderin, Special Assistant to the President on NGO Matters. In his speech, he expressed the desire of the First Lady to be part of the outreach in future while calling for improved care for people with SCD.

 

Ajibabe in his presentation spoke about the sickle cell disease (SCD) “hotspots” (the four areas of maximum vulnerability), which include: reduced immunity, increased free radical damage, increased inflammatory processes and reduced nitric oxide production. According to him, if all four are adequately addressed the quality of life of the sickle cell patient will significantly improve.

 

He emphasized the need to improve awareness about SCD and better regulation of laboratories that carry out the genotype test. “Too many labs give false-negative results in their genotype tests. This has created bigger problems in the prevalence of the condition because intending couples were given the wrong diagnosis. Any lab that can’t guarantee 98% accuracy should be banned from performing such test.”

 

Abi Jinadu-Mustapha, Vice President NIDO, Washington DC Chapter, who spoke on behalf of the Chapter President, Abayomi Animashaun re-emphasized the importance of the programme. “The outcome of this meeting has shown beyond doubt the need for more advocacy, awareness. and medical support for SCD in Nigeria. NIDO-DC Chapter will continue to explore more ways to make our contributions in this regard.”

 

SCD is a global health problem affecting millions of people around the world. It is estimated that approximately 150,000 children are born with sickle cell disease in Nigeria every year, while about 40 million Nigerians are healthy carriers of the sickle cell gene.

 

BBF is a Non-profit organization established to help raise the level of health and human performance of people everywhere. They focus on brain health and creating easy access to important nutrients for parents and caregivers of medically fragile children..nutrients which are critical to the healthy development of children.

 

NIDO in the Americas is a non-profit organization that draws resources from the synergy of all Nigerian Professionals in the Diaspora, to instill ethical consciousness and civic responsibility that will enhance the socio-economic advancement of Nigerians and humanity in general.

Questions

 

  1. Please, how can I connect with Dr. after the meeting?

 

  2. What is the difference between SC and         thalassemia?

  • Answer: Hard to explain in lay man’s terms. They are both blood disorders and can actually both coexist in the same person.  You may contact as above if further discussion is needed in technical terms

 

   3. If for a reason you are not able to see a pediatric hematologist, is there something you can do at home?

  • Absolutely: I always like to start with Vitamin D3, which works wonders for SCD, especially for children below the age of 12.

 

   4. How high are the risks that kids or adults develop autosplendectomy especially if they had not been vaccinated at younger ages? And how would you treat apart from providing supplements?

  • Supplements are the only way I treat

 

  5. Can sickle cell patients be diagnosed with other immune deficiencies such as lupus?

     A - yes

 

  6. What are the sources of vitamin D?

Answer: fatty fish, mainly.

The best bet is to take a supplement

 

  7. Is there any legislative law in place to protect these sets of people? If yes, what awareness is in place?

Answer: Not in Nigeria that I am aware of.Getting involved/advocacy and lobbying could be beneficial

 

  8. Other then the supplements, vitamin pills etc, that sickle cell patients are meant to use, what other precautions should be taken by patients?

Answer: take lots of water. Avoid emotionally charged or stressful situations, get good sleep

 

  9. So what can we do as individuals and or as a group moving forward? Get involved/volunteer, advocate, bring about awareness

  10. What is in place to prevent bullying of children because of how they look?

 

      Answer: Nothing that I know of.  Area of legislation that can be explored with involvement and advocacy

 

  11. What about legislations in place to protect people with SCD in the work place?

Answer: none that I know of. See above

 

  12. Why is it important for a child with sickle cell disease to be seen by a pediatric  hematologist?

Answer: The Pediatric hematologist is the expert trained to manage sickle cell disease in children. They will run the necessary tests and give the right medical treatment.

 

  13. Will sharing a punnett square about genotype help educate people? 

  • Don’t know what that is  (can question poster clarify/repost for follow up)

 

14. Do the Schools have any information for teachers and students so that they understand this disease and there is no stigmatizing of students who appear different from them, bloated tummies etc?

Answer: not that I know of.  See above references to advocacy and lobbying

 

  15. Are there any issues that a person with AS person to be mindful such as when travelling? I had heard about going in flights and they should make sure that they take folic acid. Any other recommendations?

  • Answer: Yes: take lots of vitamin C and D3 and drink lots of water

 

  16. Can someone be harmed by having a screening test performed? 

Answer: No

 

  17. Are there any special accommodation in Schools for children with sickle cell?

  • Answer: Not that I know of. Advocacy and awareness can bring about much needed changes

 

  18. Can sickle cell trait ever evolve or convert to sickle cell disease?

Answer: NO See references above to advocacy, volunteerism and lobbying

 

  19. Do white people have sickle cell disease or trait?

Answer: rare but possible, especially if there’s black or Hispanic blood in there somewhere.

 

  20. What health complications are associated with sickle cell?

Answer: all sorts, from joint problems, to strokes to infertility See website link for further examples

 

  21. What are the implications of government legislation /regulation re couples with AS trait getting married?

Answer: we are yet to see. It isn’t going to be easy to enforce it, though, in my opinion

 

  22. Are there other sickle cell organizations in Nigeria? And if so, are you working with them?

Answer: Yes, there are lots.We have tried reaching out to many of them, and we have worked with a few.

 

  23. I would like to ask what medical services are available in the United States for people with this condition?

Answer:  Alhaja Oyewole, @ mkmsicklecellfoundation.org, for instance. There is also a coalition of National sickle cell organizations in the USA

 

  24. Is there any possibility of making the supplements in Nigeria?

Answer: yes, there is. We are actually working on it.

 

 

Feel free to contact the NIDO DC chapter at nido.dcchapter@yahoo.com for collaborative efforts on advocacy and awareness efforts!

WORLD SICKLE CELL DAY 2020 Press Release

*Brain & Body Foundation, Nigerians in Diaspora Partners to Support Sickle Cell Patients*

The Brain & Body Foundation (BBF) and the Nigerians In Diaspora Organisation (NIDO), Washington, D.C. Chapter are collaborating to bring awareness and medical support to sickle cell disease patients in Nigeria in celebration of the World Sickle Cell Day 2020.

The theme for the programme is Breaking The Cycle  of Pain. We believe children with Sickle Cell Disease (SCD) can live as close to a normal life as possible if their parents and caregivers are aware of and follow certain key principles. To benefit from this offer, interested patients or their parents can go to www.brainandbodyfoundation.org/appointment-form/ to input their details.

According to Dr. David Ajibade, Executive Director BBF Programme, “We are happy to work with NIDO Washington DC Chapter. Moreover, WSCD is a chance to celebrate the amazing achievements of those living with sickle cell disease. In addition, in difficult times such as those in which we find ourselves, it is even more important to come together and support each other, drawing attention to those who are more at risk. We have put everything in place to ensure we reach out to as many people as possible with available resources.”

Dr. Ajibade explains further that the goals of BBF in celebrating the WSCD 2020 are two-fold.

Firstly, to create awareness by letting people know that sickle cell disease is not a death sentence and that it is possible to live free of the symptoms of the disease, and in many cases, even recover from its complications if they are equipped with the right knowledge and tools.

Secondly, to provide patients (ages 6 months to 18 years) and their families with the actual nutrients that will strengthen their immune and other systems, thereby helping them recover from the damaging effects of SCD.

"June 19 will be a day of unity and purpose for the sickle cell community, and at NIDO Washington Chapter. We are proud to work with BBF to increase awareness about SCD and its impact on individuals and their families in Nigeria." Says Abayomi Hakeem Animashaun, President NIDO-DC.

SCD is a global health problem affecting millions of people around the world. It is estimated that approximately 150,000 children are born with sickle cell disease in Nigeria every year, while about 40 million Nigerians are healthy carriers of the sickle cell gene.

BBF is a Non-profit organization established to help raise the level of health and human performance of people everywhere. They focus on brain health and creating easy access to important nutrients for parents and caregivers...nutrients which are critical to the healthy development of children.

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