Living with Sickle Cell, Suffer In Silence

Lortoria
Posted April 15, 2013 from United Kingdom

Ever heard of a disease with benefits? Think X-Men, people living on the fringe of society, who use their genetic mutation beneficially. Through ‘collective intelligence’ people will learn that their condition can be a benefit rather than a hindrance, they may even discover they have superhuman powers! But for people living with Sickle Cell disease, it might not seem that way.

The human body is amazing! It is a living machine constantly evolving to protect us from environmental threats, so that the human race can be successful. Over time, humans developed natural strategies to combat malaria. One such example is Sickle Cell disease. It affects people from parts of the world where malaria, is or was endemic. It is common throughout Africa and the Caribbean, with similar strains, such as Thalassemia, prevalent amongst Mediterranean, Middle Eastern, and Indian populations.

Malaria is contracted from a mosquito bite. The malarial parasite enters the blood stream and feeds off protein in red blood cells. Sickle cell is the bending of some red blood cells into a sickle shape, to prevent the parasite from multiplying, and thus causing death. Early ancestors of people with Sickle cell adopted what is known as sickle trait. Resistant to death from malaria, these individuals embodied “survival of the fittest” tactics, and were prosperous.

Sickle Cell is inherited, which means infected individuals may pass the gene to their children, which doesn’t present a problem, unless the child inherits sickle genes from each parent. The blood mutation loses its protective ability when full Sickle Cell is contracted. Sickled blood cells clump together, and pass through blood vessels awkwardly, which can cause physical pain or a sickle crisis.

At the age of five, I was diagnosed with Sickle Cell Anemia. My mum took me to Kings College hospital for regular checkups. That hospital smell, you know the one, antiseptic, would infiltrate my nostrils. The labyrinth of corridors, lifts elevating, A&E overcrowded, patients languishing, lunch trolleys shaking, nurses to-ing and fro-ing, and doctors with a trail of students following in their footsteps— it was fascinating from my eye level.

I know more about hospitals than I do my condition. This is a general theme amongst sickle sufferers, their families, society and even doctors. Throughout my life I’ve struggled to explain my condition to educators and employers when I spontaneously fall ill. There is a lack of awareness, funding, and understanding: therefore, if you live with Sickle Cell, you suffer in silence.

My doctors have made remarkable discoveries by using people like me as a blueprint for their research. Current research suggests, Sickle Cell benefits can be harnessed when the fetus is in the womb to improve the health and care-plan of each patient. However, there is still a lot of work to do before future sickle generations can benefit. Sickle Cell is very underrepresented and does not receive the awareness and funding it deserves. If this is fate, I urge my World Pulse community to help me in my quest to discover more about this complex, and yet flexible disease.

Attachments

Mother and child
Sickle Cell images
Voices of Our Future Application: Your Journey and Vision

Comments 25

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Merlin James
Apr 15, 2013
Apr 15, 2013

i wish you find relief and cure in every way dear. The Lord be with you in all your pain and struggles and give you joy. we are here waiting to hear from you, more sharing and writing.

Love and blessings.

Lortoria
Apr 16, 2013
Apr 16, 2013

Hi Sharontina,

Thank you for your love and blessings, they are much appreciated. There is no need to be sorry, I'm a strong believer that things happen for a reason. I am not as worst affected as others with this disease, and fortunately I have a good team of doctors to support me. Using their research, I hope to inspire and offer hope to others, whilst spreading awareness. I wrote this in a positive way, because that's how I feel about it.

Warm regards

bhavna
Apr 15, 2013
Apr 15, 2013

Dear Lortoria, Its never easy to tell the story of our own suffering. I understand what you might be going through. One of my dearest friend is an AS (having sickle cell trait) and one of my extended family is a sufferer of Sickle cell. Indeed, more result oriented studies are needed to ensure full-proof cure. Stay strong dear and hope for the best.

Hugs and love bhavna

Lortoria
Apr 16, 2013
Apr 16, 2013

Hi Bhavna,

I'm so glad we connected on World Pulse. Sharing our experiences about important subjects like this is vital to the communities we live and associate in. You're right, It isn't easy revealing such personal information, but this disease is so overlooked that I had to take that leap of faith and just do it -- not just for me, but for everyone else who may be affected in some way, whether direct or indirectly. See you know hat I'm talking about as you have two people in your circle with this disease, and I bet you they feel a similar way as I do. Any information I can bring to light, I will.

Thanks for the hugs and love, I'm sending some right back at you :)

Warm regards,

bhavna
Apr 20, 2013
Apr 20, 2013

Thank you so much Lortoria for the affection. It is indeed essential to reveal any information regarding this disease. One more cure to this disease is knowing it. You are a very brave woman. Keep up the work.

My pleasure meeting you and I should thank WP for giving me the opportunity to meet wonderful ladies like you.

Much love bhavna

Bih Pascaline
Apr 15, 2013
Apr 15, 2013

Dear Lortoria, I know you found out and I know you repeat it to yourself everyday "I am stronger than I think". Sweetheart, you are a survivor and I am loving it. Sharing as I have experienced, is healing so please Lortoria keep writing.

Love Passy

Lortoria
Apr 16, 2013
Apr 16, 2013

Hello Passy,

So nice to finally communicate on here. We don't know each other, but you are so right! I do tell myself that. When I see how others are affected, and the blessings that I have been given, it makes me feel like it is my duty to do more with my life. When I think of the expression "Survivor," I look at it as someone who has been to war and now must share their survival tactics with others who may be facing similar situations. Sharing IS healing -- I'm starting to feel even better already :)

Warm regards

Zandi
Apr 15, 2013
Apr 15, 2013

Hi Lortoria, oh! wow! This is the first time I hear or even read about sickle cell and I agree with you that there is not enough awareness about the diseases. Sadly in some rural communities you might find that people are even misdiagnosed or even worse live with the condition with knowing what to do and even loose hope,

I feel you, keep your fire for life burning.

Warmest Regards Zar

Lortoria
Apr 16, 2013
Apr 16, 2013

Dear PrincessZar (Oh, I love saying that),

I'm so glad that I have brought your attention to something new. I hope that you never, nor anyone else in your family ever experiences Sickle cell, but yes, it is so good to know about it.

You hit on an important aspect about this disease, many people don't want to talk about it. This could be because of social stigma, a lack of understanding, feeling embarrassed or simply not even knowing you or a loved one has it. I can definitely see how these reasons, particularly the latter, would be the case for many in rural communities. It is a complex disease (as mentioned in article) that affects individuals differently, so a self or professional diagnosis could be done incorrectly. I'm glad you shared your thoughts on this matter.

Warm regards,

Debra K Adams, MA
Apr 15, 2013
Apr 15, 2013

i am glad to learn of the sickle cell. It makes it much less frightening, when you know more about it, I believe. You are a living testament to the strength of both your physical body and your character! I know this impacts people around the world, so it is important to share your knowledge with us. I appreciate it!

Lortoria
Apr 16, 2013
Apr 16, 2013

Hi Debra,

I'm glad you felt moved enough to comment. Just by doing this exercise we are spreading awareness, and it is always good to hear others opinion wether they have personal experience or not. You are definitely right, sharing experiences and information makes something we may not understand less frightening. Thank you so much for your kind words. I feel charged by your comments.

Warm regards,

Yosra Akasha
Apr 16, 2013
Apr 16, 2013

You are a fighter Lortoria

Yosra Akasha
Apr 16, 2013
Apr 16, 2013

You are a fighter Lortoria

Yosra Akasha
Apr 16, 2013
Apr 16, 2013

You are a fighter Lortoria

Lortoria
Apr 17, 2013
Apr 17, 2013

Hi Yosra,

I have been fighting all my life. It's now time to use my energy constructively to bring about positive change which is bigger than just thinking of myself. I hope I reach my goals. Thank you, kindly.

libudsuroy
Apr 21, 2013
Apr 21, 2013

What a positive attitude!

Lortoria
Apr 21, 2013
Apr 21, 2013

Thank you! Sending some blessings your way too x

awinkie
Apr 17, 2013
Apr 17, 2013

Thank you for sharing your story. World Pulse is a strong community from which I feel as though being able to share your story and what you are going through will bring you comfort and support but can also change people's perspectives on the disease and how it is handled. Keep up the great posting!

Lortoria
Apr 17, 2013
Apr 17, 2013

Hi Awinkie,

Thanks for stopping by my post and reading it and leaving a comment. Before World Pulse I was a bit embarrassed to tell people about this, I would keep it to myself, and only let my closest of friends know. I realised this wasn't helpful to me or people who care about me, and others I encounter. This small post has had a bigger impact than I initially imagined, not just on others but on me, too. I'm so glad I discovered World Pulse because I have noticed a slight change in my character (for the better). I WILL keep up the posting.

Warm regards

Sarah Whitten-Grigsby
Apr 20, 2013
Apr 20, 2013

Dear Lortoria,

You've written so well and strongly about Sickle Cell disease. One can learn a great deal about both the disease and your ongoing experience with it from your writing, and you seem to have a talent for using words powerfully. Clearly, there is a great deal more for you to share on this subject, and you're in an excellent position to share what you've experienced with others who have Sickle Cell disease, in order to provide them with helpful, supportive information and hopefully, a positive vision for the future. So, thank you, and may Voices of Our Future prove to be a good avenue for you. Best Wishes, - Sarah
Lortoria
Apr 21, 2013
Apr 21, 2013

Hi Sarah,

I read your comment last night (there's about 8 hours difference between the UK and the US depending on the state you're from), anyway, I was feeling in quite a bad way, and your comment put a big smile on my face. I'm so glad you now know about Sickle, and enjoyed my post--that's all I can hope for at this time!

You're right, there is so much more to say on this subject, and as you clearly assess World Pulse is the platform where hopefully I can do this. Thank you for your comments about my writing, I'm new to this, so it's always good to have feedback. The main thing I want to achieve are the things you state above, and a sense of enjoyment for the reader. Your words are inspiring.

Many thanks

Olanike
Apr 20, 2013
Apr 20, 2013

Your story is very moving but I cannot ignore the fact that you wrote well. I have been around people suffering from Sickle cell anemia and understand what you must have gone through and may still be experiencing. I am touched by your resilience and strength and that stands you out.

Your voice is heard and I am sure it makes a difference!

Thank you so much for sharing and letting me into your world.

Greengirl.

Lortoria
Apr 21, 2013
Apr 21, 2013

Hi Greengirl,

Thank you on both counts. Being around Sickle Cell is not an easy experience to digest wether it affects you directly or someone else. I'm glad that you shared your experience too, as it gives weight to the gravity of this subject. Your comment was the first thing I saw this morning, and I can honestly say I was touched by your kind words. If one person is supported by this post, then it has done its job.

You are so welcome!

Warm regards

Gloria
May 07, 2013
May 07, 2013

reading your stories , i realise that we are not he only one suffering with this disease. but I feel like you are lucky to have nice health care its helps you relieve stress, its not the same as for sickle celler living in dark part of the world where you have to walk for kilometers to find hospital, or where some time aunts says that its witchcraft suffering you, ..... I am telling its the worst thing that can happen. you know how painful crises and you know that there is no hope in the nearest future.

Dear , i read your profile and i think that we aew to puts our effort together and open a home for sickle cellers in congo, in the eastern part of congo, where at least they are receive care, advices, awareness and council. I am working on a project i will send it to you and together we determine ways of collecting funds to open that home .

I wish my brother Samy could see you, so that you create the love of live and hope again in his life.

Be strong

Warm hugs

Gloria

Lortoria
Aug 15, 2013
Aug 15, 2013

Hi Gloria,

I chose to write this story to engage and empower other sickle cell sufferers. I know that healthcare in countries like Congo is not as accessible to everyone as it is here in the UK. I wanted to connect with other like-mineded people to raise awareness and share new developments against the fight of sickle around various parts of the world. If you have any other online sites let's connect so we can share further info.

Warm regards