Sikcell: People living with Sickle Cell

We still Hope

Hello! Just wanted to introduce myself.

Hello everyone! My name IS Ann and I am new to this site. I am a 38 yr old mother of three. I have Sickle Cell Anemia (SS). My oldest child Justin was also born with (SS) due to his father being a trait and I did not know until I got an amnio done when I was 6 months pregnant of him. My two daughters are just trait. When I was young most of my life was in the hospital sick. I was known as the worse case they seen. I also was told at age of 7 that I would not live past age 18 and that I could not have kids cuz it can kill me. But here I am 20 years later with three children. After my last child my health gradually got worse... I was again going every month to the hospital. Now not only do I have SS but I have iron overload, osteonecrosis in both knees , both hips and both shoulders , I also suffer through muscle spasms and migraine headaches as well as getting a lot of blood clots that is dangerous that I have to be on blood thinners now... I never have a day without pain and I don't only have myself to take care of. I have a fiancé who love and takes care of me while trying to stay at a job.. He had lost many due to the fact I am always sick and he needs to be here for our kids. My son Justin is 14 n has SS and asthma and at the age of two had his spleen removed or he would have died. He is a smart young boy but has a lot going on as a teen . My oldest daughter Jaylynn is 9 and she is smart . She has the trait but has eczema . She also has a reading problem and speech problem as well but she still is an A student. My youngest daughter Jewelee is 8 and she also has the trait. She is the one that gives me more of a challenge than any of the others. She has ADHD,ODD,CD,Specific Learning Disability, Speech and language Impairment. I love my family . But I can't help but think " what have I done so wrong to suffer like this and have kids that have to suffer through what they have". I came here to see if it was only me that has been suffering alone so much or has anyone had similar situation. I doubt anyone is going through everything I am or even half. But I just needed to talk and get all this off my chest.

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Permalink Reply by Sickle Cell Warrior on June 5, 2014 at 12:02am

Hello Ann! Welcome to the group! Looks like you have your hands full with all those kiddies:) Your fiance sounds like a great support system. I hope you find the support and encouragement you need. Take care, Tosin aka Sickle Cell Warrior

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Permalink Reply by Ade Dotun on June 12, 2014 at 11:14am

Hello Ann, welcome to the community. You have been thru a lot and still pushing through, I hope and pray that things get better for you and your children. Stay strong and take care.

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Permalink Reply by Felicia L Williams on June 12, 2014 at 1:35pm

Hello Ann welcome :-) I found that essential oils and a good basis for nutrition is key to managing Sickle Cell and It does seem like you have a lot on your plate. If I can help in any way for relief please let me know I can share my story with you. I do want to add that I am so happy to see that you decided to have children I've been so scared to take that step because Doctors told me something similar to me and my mom when I was younger. Thank You for sharing.

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Permalink Reply by Robert Dyal on June 19, 2014 at 2:42pm

Hi Ann I am introducing myself to you I was born with SC disease and I am 50 now recently I was diagnosed with proliferative sickle cell Retinopathy (which is bleeding of vessels into the eye so I am urging all member whom have sickle cell (SS) or trait which is either AS or Ac , I have SC disease which is a variation of the diseases its not as harsh as the type you have as (SS) is more severe when you live in a cold country ,And Ann I wonder why some times but I love my family they love me its been hard some time but with faith ANy think is possible I am one in a billion and I am here for a reason the pain and issues worry me but I continue "he put me here for a reason god i mean and without him we may not have reached where we are I joined this site to meet and speak with member with the same or similar situation

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Permalink Reply by Anita Bratcher on June 28, 2014 at 9:52pm

I'm inspired by your courageousness.

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Permalink Reply by Donicka Rolle on September 19, 2014 at 5:35pm

Hi Ann, I to am very new to the site as well. I just want you to know, that you or no one else suffers with this disease because they have done something to deserve it. You have to stay positive. Negativity will only bring you further down. Like you said you beaten the odds doctors spoke over your life. You've accomplished things they said you would'nt have. 3 children, who are perfectly imperfect. Every child, family, and sotuation has there differences. No two situations will ever be alike. But what you've done over and over, is beat odds, and show people how you are stronger than your disease. Continue to do that. It may be hard, but keep pushing through it. Having your hands full is a good thing. Stay busy, do what you can, and rest when you need to. Keep yourself and your family surrounded by positive people who love and support you. Don't allow worry, or fear to bring you down or cause you to question your choices. Continue your journey as the strong, conquering woman you are!!

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Permalink Reply by Jennifer Wilhoite on February 11, 2015 at 4:52pm

Hello Ann how are you, my situation is similar to yours. My oldest daughter had the disease, and my two youngest daughters, have the trait. Just like you doctors used to tell me that I would die early, but now I am 49 and i am still here. Some nurses dont understand the disease, and even some doctors. And when you get older if you develop pulmonary hypertension, there are some wonderful medications that can help you. So welcome to the group, and I wish you well, with as few crisis as possible.

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Permalink Reply by dawn denise on March 3, 2015 at 9:03pm

Hi there, I feel you.

Have you asked about a bone marrow transplant? It can cure this disease and the offer it to people with severe disease so you might qualify. You can ask your hematologist if you are at a large academic center or look on the NIH website for sickle cell studies. It works best if you have a full sibling. I am going to the NIH in April for an evaluation for the bone marrow transplant.

Stay strong..