Sickle Cell Hope Alive Foundation (SCHAF), on Thursday met with the Mothers of Sickle Cell Warriors for an Awareness program at the Apex Event Centre, Ibadan.

At the maiden meeting with Mothers of Warriors, they were admonished to keep hope alive and be relentless in their fight against sickle cell disease.

The Founder & Trustee of the Sickle Cell Hope Alive Foundation (SCHAF), Prof Adeyinka Falusi, made this call in Ibadan at the meeting organised by the Sickle Cell Hope Alive Foundation, (SCHAF) for mothers as care givers of children living with sickle cell disease in Oyo State and its environs.

She said sickle cell disease can be managed, with the right information, awareness and proper action on the knowledge gained about the disease.

She cited Alhaja Asiata Aduke Onikoyi-Laguda from Lagos, who lived up to the ripe old age of 95 years, as an example that SCD is not a death sentence and that with adequate care, there is hope despite the challenges posed by the disease.

In her welcome address, Professor Falusi, thanked the women for taking time out from their busy schedule to attend a meeting that will not only equip them with the right information and knowledge on the care of their children living with the disease, but empower them with the right knowledge on how to manage and reduce its prevalence in their families and community in general.

Speaking further, Professor Falusi reiterated the Foundation's commitment to supporting mothers as caregivers to alleviate the pain of their children by sourcing medication for them and also empowering the mothers financially, encouraging them emotionally and psychologically and demonstrating to them that they are not alone in their struggles.

Speaking further, she said the Foundation, in alignment with her vision to reduce the burden of SCD, will continue to support the Warriors and their caregivers. SCHAF is poised to source and provide the needed terms of provision of routine medicines financial, emotional and psychological assistance to mothers who are hard pressed with the challenges faced on their children with sickle cell disease.

Falusi, while speaking on managing the disease gave a 7-point advice that mothers must adhere to. These include:

1. Optimal water intake daily.

2. Availability of thermometers as necessary facility in their homes for accurate evaluation of fevers. The provision of Thermometers to all who needed one was made possible at the venue by the SCHAF.

3. Provision of balanced nutritional diet with protein, fruits and vegetables.

4. Keeping the appointments of their wards as demanded by their physician who is able to pick up some yet upcoming infections or impending anaemia.

5. Strict compliance with their own prescription and never copying the meds of others.

6. Use of Supplements such as thyme, Garlic etc will help either as microbial or antifungal agents to ward off infections.

Falusi, while speaking with CEOAFRICA after the meeting, thanked the mothers and care givers, sufficient for attending the event, while promising that SCHAF will always be available to provide assistance and support to them in whatever capacity.

Also, in the area of awareness and advocacy, SCHAF has trained youth corps members who in turn train secondary school students in selected schools in the 5 NYSC Zones in Oyo State.

The train- the -trainers was just concluded with over 250 corps members. These corps members are engaged as vehicles of change to educate members of their families and communities on sickle cell disease"

Prof Soyanwo, of Palliative care Society of Nigeria, an Anaesthesiologist and Head of Centre for Palliative Care, Nigeria, spoke on palliative care for sickle cell patients. According to her, palliative care is an important component of the basic essential services not only for SCD within the universal healthcare coverage.

Soyanwo admonished mothers as caregivers, not to view the disease as a death sentence, but treat their children with compassion, care and empathy.

During the meeting, an important Indept interview to source the challenges faced by mothers was well coordinated by Dr Salawu Mobolaji

Another resource at the event, Dr. Kotila emphasised that all children should be given adequate care, love and support. She said children with sickle cell disease are God's gift and should not be austracised but treated with compassion and empathy. She said children with the disease should be given proper diet their dignity respected in the same vein that earlier guests prayed for them and admonished them to support their wards adequately.

Speaking with CEOAFRICA after the event, Mrs Oyewale, Olabisi Munirat, and warriors' mothers advised that they all need to respect the independence of these children with love and care. Others should make them best friends. A warm exchange of ideas on priapism, low self-esteem and other psychosocial experiences of their teenagers and young adults were freely discussed after a sizeable number of participants were engaged in in-depth discussions to tease out the various challenges faced by these caregivers.

Although specificaly tagged a mothers forum, some fathers who opted to join us also participated actively in all the facets of the discussion. All the caregivers advised that intending couples ought to always know their correct genotypes much ealier before marriage as most times it's already too late to make any desired change. Intending couples should be truthful with each other on their genotype from the onset and not sacrifice the lives of their children on the altar of love.

Sharing her touching experience with CEOAFRICA, a parent at the meeting, Mrs Morayo Adedoyin, said it has been challenging for her. She said her former husband, who is much older than herself did not reveal his genotype to her, when she told him she was AS genotype, during courtship.

Two years after the birth of her daughter, she began to have frequent pain, and was asked to go for genotype test, that was how she discovered the father is AS genotype.

After discussing that the daughter is SS, he deserted her to fend for the daughter they had together. For 13 years, she has been responsible for her care and management. " It has not been easy taking care of my daughter. Most times, I spend all I have in taking care of her, she said.

She strongly advised, intending couples to avoid her errors and ensure they know their genotype before marrying and deciding to have children.

Parents and caregivers were given the opportunity to ask questions freely after the successful interactive meeting. Parents raised questions, ranging from concerns about delayed menstruation in females and size of the male reproductive organ with sickle cell.