Sikcell: People living with Sickle Cell

We still Hope

Vera 45, Female Lagos Nigeria: Like

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Started this discussion. Last reply by Bukky Ade Dec 28, 2010. 1 Reply 0 Likes

Started this discussion. Last reply by *Shawnii* Jun 10, 2010. 10 Replies 0 Likes

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"Happy birthday Vera, hope you are well!"

May 20, 2020

At 8:24pm on May 20, 2020, Ade Dotun said…: Happy birthday Vera, hope you are well!

At 3:28am on May 20, 2012, Shem R. Kavuku said…: Happy birthday Vera all the best in life! Cheers!!

At 12:04am on July 29, 2009, Sickle Cell Warrior said…: Hey Vera,

thanks for the ad! In Nigeria, I had less crises...only sick twice a year at the most. I think it was because I was on a healthier diet, and perhaps cos I was younger. I was also treated better in the hospital. Thanks for asking this question, I'm gonna blog about it.

At 9:45pm on July 26, 2009, Nina R=Audrey said…: I haven't logged onto my page in so long..thanks for your response.
So far my oldest daughter diagnosed with Sickle Cell SC is doing well.
When she was a baby it was very difficult but as she has gotten older it has subsided to some degree. My youngest daughter, diagnosed with SS just had her first pain crisis. It was very emotional for us all..she is eleven months. Contact me when you can..she is doing better by the way.

At 3:21am on June 12, 2009, shawn tyler said…: Thank you for your message.. I am a parent trying to understand and gain as much knowledge to keep my baby healthy. I think this is a great way for parents to interact and learning how to deal with the unexpected.. We have a support group here in Los Angeles; however, on a good month three parents will attend. Please lets help all parents learn and advocate for a cure

At 8:27pm on April 18, 2009, iysha said…: I have never heard of dioscovite but have heard some good things about nicosan. I will do some research on it.

At the clinic they monitor her progress and do blood work every nine months to a year. She has had blood work done both here in Trinidad by her regular pediatrician and haemotologist as well as in orlando at the clinic.

At 9:08am on April 18, 2009, iysha said…: Actually, I do not think sweat has anything to do with the condition, I have done a lot of research and have found no such link. However, my daughter also has allergies and sneezes a lot. The slightest allergen in the atmosphere bothers her. But it is no biggie. Have you done research on Nicosan. I have been seriously researching it and will make a decision if she really needs it. So far I have not had to make that decision, thank God.

My daughter attends a sickle cell clinic in Orlando every four months and the doctor she sees did not know about Nicosan. He promised to do some research on it. I found that very strange. Does your baby go to a clinic?

At 9:37pm on April 17, 2009, iysha said…: Actually she received the pneumoccocal vaccine, the menningitis vaccine and the yellow fever vaccine. In Trinidad it is also very hot and we are in the A/C most of the time also. My daughter sweats a lot as well but what I do is when she is moving around during the day I usually leave her in shorts and a t-shirt or vest but at night when she is asleep I dress her in long sleeved pyjamas and socks just to make sure she does not get too cold from the A/C.

At 5:39pm on April 17, 2009, Ade Dotun said…: Thank you, i really appreciate it, that is what made me to create it because i wanted to connect to people that can relate to me and speak the same language like you said...God bless

At 1:58pm on April 17, 2009, iysha said…: Hi Vera, sorry I took so long to respond. I really did not do anything special, just made sure she got all her shots and some extras on time, gave her as much fluids as she will drink in a day and kept all her clinic appointments. I think also, I was a little extra cautious about being clean, that is washing my hands and hers very often, especially if I had been out of the house at all, as well as insisting that anyone who came to visit washed theirs hands before touching her.

I have been very lucky that my aunt is able to babysit her for me while I go to work so she has not been in a day care environment where children tend to pick up lots of germs and can get sick fairly easily and often.