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The Triumphant Struggle of One Man. Product details Mass Market Paperback Publisher: View shipping rates and policies Average Customer Review: Related Video Shorts 0 Upload your video. Try the Kindle edition and experience these great reading features: Share your thoughts with other customers. Write a customer review.
There was a problem filtering reviews right now. Please try again later. I have been searching for books about parenting a sickle cell infant ever since my son was diagnosed a few months ago. I think the author did a great job in providing a few tips and stories of what she went through. Also her tips on record keeping from the START and dealing with the school districts regarding your child mine is not old enough yet will be handy over the years. I appreciate the time and effort that the author put into helping out other parents. It can be so scary to receive this information about your child and I feel the more that I can read about it the better.
I've got enough information on the medical terminology I think this book has helped me try to that.
The Lived Experience of Parents of Children with Sickle Cell Disease: A Qualitative Study
As an advocate for other families like ours dealing with Sickle Cell, this is a must-read. It helps with perspective and insight on this dreadful disease. They were so reluctant to give him any strong pain relief. They just did not seem to believe he was in pain. Either that or they did not understand. No one spoke to us we were just left to wait and see what happens until he was screaming constantly. Even as a nine year old child, the attitude seems to be that sicklers are either hypochondriacs or drug addicts. When you are in hospital you have to literally scream and shout the place down to get the care you need.
For me, the only way to truly improve care for sicklers, would be for every hospital to have a lead person who understands the condition thoroughly. Someone who knows what patients need, how to support them and show empathy. They are very hit and miss. And that is exhausting. Who can Jacob speak to about how he is feeling and what he has gone through? Other than me, no one. The patient experience survey findings showed that awareness and information provision are lacking, does that surprise you?
Would you agree with this? They just kept giving him Paracetamol, which barely scratches the surface of chronic pain. Whenever Jacob needs emergency pain relief, he has to prove he is in pain. She just follows my lead. Well, because of his age, he sees his care through my eyes a lot of the time.
He has blood transfusions every three weeks, so is very aware that he has sickle cell. I would love to see some kind of buddy-up system, where children can share experiences and talk about how they feel. Crisis can be really physically and mentally draining, and so frustrating for him. Having the opportunity to talk about his feelings, with someone other than his mum, about what it is like to grow up as a sickler, would be life changing for him. I can teach him to take his medicine when he needs to and always put a coat on, but who does he talk to when he is feeling sad?
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Through the Sickle Cell Society we have created a mums network, where we can offload on each other, but there is nothing for kids, and it is so needed. I can tell him to and teach him to take his medicine when he needs to, and to always put a coat on. But who does he talk to when he is feeling sad? When he was in crisis earlier this year, we arrived at 9pm and waited five hours for pain relief. He was screaming until he went hoarse: They made him wait in agony until 2am, when they finally gave him some morphine.
As a mum, that is the most terrifying thing ever.
My baby wants to die because he is in so much pain, and no one but me is helping him or taking him seriously. And there is nothing I can do about it. Some parts of the service are awful and others are better. Visit the Sickle Cell Society website for further information about the condition and support available for people affected by it: Sickle cell trait means that you carry a gene for a serious condition called sickle cell disease SCD.
This in itself does not normally cause problems and sickle cell trait is not considered as a disease. People with sickle cell trait are well, and will usually only know about their trait if they are tested for it. Pregnant women and couples planning children may want to know whether they have sickle cell trait, because if both parents have it, their child might inherit SCD. In England, tests for sickle cell trait and SCD are offered to pregnant women and new-born babies. You have been actively involved in SCD research during your clinical career, what initially peaked your interest about this disorder specifically?
Of all the health service care areas, self-management self-care , is one of the most commonly and easily misunderstood. Thank you for your honest words about the reality of sickle cell. So far my daughter has had 1 crisis and an enlarged spleen a few times. Thank you so much for getting in touch Sarah. We completely understand that you must be scared.
Have you tried reaching out to the Sickle Cell Society? As Sheree notes in this piece, there are support networks available to you and your daughter. The chance to connect with other parents in your position, If you need and want them.
You are not alone. Sarah, make sure that you contact your sickle cell community nurse and your school and put together a care plan for your daughter. They keep me informed if there are any issues. Make sure the school has some of her meds if needed and give them authority to give her when needed or requested by you.
Over time you should become a little more relaxed knowing that everyone understands and communicates any issues.