Yet another international thal day meets us with the theme:
'Thalassaemia past, present and future: Country practices, progress and growing
recognition of patients' by popular vote among our thalassaemia communities
around the globe. This theme was in hope to reflect and appreciate the progress
among our health services to give a new meaning to life. This year’s thalassaemia
day how ever comes with a feeling that has fallen heavy in my heart.
As we grow older, we are only a few in number. I wonder what
hope can this country give to the young ones who are born to live this
struggle? What hope is there that in the future no child will suffer our pain?
What standard of care will ensure to improve our quality of life? When are you
all going to realize, the inability to produce blood is not a disability, however
we are desperately in need of stability? When will the world accept us as
warriors and encourage us with equal opportunities to learn, work, and build
families? Do you really think, the services such as transfusion and a free
medication is our gateway to live and fulfill our dreams? How about recognising
the need for psychosocial support? How about addressing the need to educate societies,
families, and patients on the importance of keeping adherence to our treatment?
How about simply not bullying us for the way we look?
Each year, I only hope that everyone recognises the need for
a little progress every day. But, for the past couple of years, thalassaemia
day greet us with pain. The list of dear lives that we have lost keep on
growing. Beautiful moments that had made us stronger are only memories when the
warriors who fight for our past, present, and future loses their battle.
My friends, even though they are no longer with us, I can still hear their
voice, fighting and standing up for our treatment practices, progress, and
empowerment, for our quality of life... and yet only little has changed.
Even more so, this year has been a tough one. Even though we
are missing good old friends each year, I was never prepared to lose my beloved
soul sister Niuma. She is a role model and a true inspiration. She fulfilled
her dreams and gave all of us a precious gift. A little boy who will be the
touchstone of her existence, a light of hope for all of us living. I want to
keep her legend alive for he needs to know the story of his brave mom, who
changed our lives and that she loved him with all her heart and life even way
before she knew he was even a possibility.
I am proud of who she has become and what she has
accomplished. My love and respect for her will never be forgotten. She taught
me to be calm, to be persistent, to keep on going when the wind seems to be
against. She reminds me every time to set my sail and be the storm. I will miss
her journey, her guidance, her love, and her patience. I miss her so
much.
There are no words that can express this feeling when you
survive so many losses. Everyone is so quick to say how strong and tough we
are, but honestly, we do not have a choice. And this is not a choice we would
wish for anyone.
Today, I want to celebrate International Thalassaemia Day, by cherishing
the memory of those fallen. The only way I know how to grieve the loss of
warriors is to raise voice for our future. Speak up for prevention of new
births to our thalassaemia and haemoglobinopathy registry. Educate to prevent
iron overload and its complications. Empower our community to prevent negligence
and lack of awareness on our treatment and management. Encourage others like me
to choose to live a better quality of life.
May Allah bless the departed souls, grant them Paradise, and
give strength and courage to live and perceive life the way we all dream to
accomplish. Ameen!
THERE IS A CURE TO SICKLE CELL ANEMIA, AM A LIVING TESTIMONY.
ReplyDeleteI write to you with great joy in my heart how Dr Alegbe John turned my life around. I was born a sickle cell patient through the gene- type of my parents and became a carrier which led to immense crises all through my growing up years. This particular ailment was called rheumatism, the pain of the bone which I was told was caused by difficult circulation of blood in the vein axis.
Growing up was like hell because apart from the pain and the fear of it, I also lived in bondage for years before Dr Alegbe intervention.
I was restricted from doing what my mates could do, there was a lot of don’t touch, don’t eat, don’t go, don’t wear by the doctor and I lived all through this period on drugs. I was made to know that without this pill, my life will would finally come to an end. It was total bondage.
During this period of pain, I would cry, shout, throw myself to the ground, destroy things I could find around me just because of restlessness the pain caused. My Dad got the contact of Dr Alegbe from the internet and he emailed him told him about me and made purchase from his product. I too the medication for one month and he always call to know how am feeling, that was how i was cured completely. any one can reach him On his gmail address at dralegbe@gmail.com
I stopped taking my drugs because Dr Alegbe John has made me completely cured, I no longer feel pain neither do I remember how it feels.