My name is Charisse Howard-Jones. I am 29 years old and I was diagnosed with Fanconi Anaemia at the age of 7 years old. Fanconi Anaemia is a rare, autosomal, recessive disorder (both parents must have the gene). It is most often characterised by bone marrow failure - meaning that the marrow is unable to make the right amount of platelets, Red blood cells and White blood cells. Fanconi Anaemia is also strongly associated with the onset of leukemia and other types of cancers like head and neck cancer as well as a range of birth defects. I have annual bone marrow biopsies to watch out for symptoms of further bone marrow failure and the onset of leukemia.
I was diagnosed after the initial onset of bone marrow failure. First symptom noticed to investigate my health was instantaneous bleeding and bruising due to inadequate platelet count. My bone marrow failure was stabalised through the administration of the steriods Oxymethalone and Prednisolone which helped stimulate my marrow and therefore produce adequate blood cells.
I am currently married and have a beautiful 4 1/2 year old son named Isaac. I am no longer on the oxymethalone as I ceased it due to its affects that it can have on a child in the womb. My blood counts are stable and I have been relatively well all through my life. I do have immunoglobulin infusions (IgG) every 6 weeks to maintain my IgG levels so that I remain well. I suffer from low immunoglobulin G levels and as a result, catch colds easily. However, with the infusions, I am as fit as a fiddle and have only started them about 8 months ago.
I am a born-again Christian and love Jesus with all my heart. Even though life has been tough at times, I love it to the fullest. I have a great family - a wonderful husband and son. Hope you enjoy my new website!!
8 comments:
Hey Charisse, it looks like our stories are a bit different from what I've read. I'm very happy that you have a family and are doing well, as you say. Medicine and treatments seem to take up a lot of your time; it's making me wonder what my life will be like from now on ->...
Oh well, it is what it is
Thank you for following my site so closely. I wish you the best in all that you do and that is done to you.
namaste,
Roy
Prov.3:5-6-Trust in the Lord. Hi Charisse. Our names are Gary and Toya Tyler. Our daughter Kiara, who is 5 years old, was diagnosised with Fanconi's in January. A donor was found, using donated cord blood stem cells. She is currently in the hospital, recoverying from the transplant which was on July 5th. It has been difficult watching her, and at times, difficult to comfort her. But just as God's word says to Trust Him, that is our encouragement to you. Continue to trust him, because He has given hope beyond the pains of this life. That is what we tell our daughter everyday. She is learning the concept of being brave, but being brave because God is with her.
Prov. 3:5-6. In Him. Gary and Toya Tyler
Hi,
Sickness is evil, that needs to be conquered. It will be attack you from many sides; your health, your faith, your mood, you relation with your loved ones.
Dont let sickness tramp on you. be strong, be mean towards it. Eat when you don't feel to it, walk, laugh, see a comic movie.
Don't let depression take hold on you (If you can go to a psychriatist do.).
You must have conquered sickness many times; visualize this one as any one of the conquered ones.
God helps those that help themselves.
Hi Charisse,
I hope you recover quickly and your pain gets better. I am thinking of you and wish you the best.
Take care,
Mary Nori
(Keelyn, 23; Michael, 12; Matthew, 8 FA-A; Emily Faith, 2)
Hi Charisse,
Looks like you are having a blast in the pool. Isaac is getting so big. I need to update Alicia's site, we were in Cincinnati last week for another Biopsy and her cbc's are dropping fast but don't have the Marrow results yet. Looks like transplant will be soon. Tell Alan Hello.
Michelle
Hi Charisse,
I just met your sister in Canada and she told me about your blog. I dont know where you find the time to write so much stuff happening in your life! I really enjoyed browsing around and reading your story. Indeed you are such a brave and courageous person. I love your new home with such a great backyard! I look forward to reading more of your blogs. You are inspiring me to do something and start recording my life too...
Have a blessed day!
Tatiyanna from Canada
Hey Charisse, I have read quite a bit about you; and actually discovered you on another friends caringbridge page. I have been meaning to drop you a note for a while now; I try to keep up on everyone with FA; to support eachother and know the lastest FA news/happenings. Anyway; my name is Michelle and my husband's name is Stan; we have a 6 year old daughter who has FA. She was diagnosed in June 2002. She is approaching her 1 year post transplant anniversary on April 3, 2009. :) Just wanted to drop you a note. Hope to talk to ya soon. Take Care. The Kalemba Family
Laura & Rodney Baker
Hi Alan
We just want you to know that we will be praying for you and Isaac and we want to help you in any way we can. JUST SAY THE WORD
Charisse was a tower of strength - every moment we had with her was special and will always be cherished. Despite the fact that she faced the hardest battles, she would always encourage others. She was such a blessing for us and so many people.
Please let us know if we can assist in any way. Much love, Laura and Rodney
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