Thalassemia Patients and Friends
Discussion Forums => The Spotlight => Topic started by: alnahrahmea on February 18, 2010, 10:52:35 AM
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It's been almost 3 years since I last visited the group.... And my how it had grown ! :) I don't know if I am happy or saddened by it. I am happy because compared to how it was years ago people now are more informed about Thal and more and more people are willing to support Thal patients. I am saddened because Thal population seems to be growing. What is happening with people's genes? Could what people are eating affect genetic conditions?
Anyway, I am here to bring good news. I have suffered Thal for 5 years before I underwent a trial procedure 3 years ago. I had a son, I went to the country side to rest and watch my son grow. I am still taking folic acid up to now. But hence, I have been blood transfusion-free for almost 3 years on May 2010 and my hemoglobin levels are stable between 9 to 12 (90 to 120 or 900 to 1200 in some scales). I am watching my son grow into a very healthy toddler and I am living a quite "normal" life with him as a single parent. I chose not to marry because I had Thal, but I am thankful for my son's gift, and I am proud to be a mother of a healthy toddler. He is going to school now. Quite gifted at age two (maybe an after effect of all the folic acid I chomped on while I was pregnant). There is no cure for Thal, but there is hope. :) I am still praying hard up to this day. :)
Well, Thanks to everyone who had lent their ears and their hearts during those trying times. Andy, Danielle, Courtenay, Lyanne, and the rest who shared information and support that I haven't mentioned. You are all not forgotten and I will always be here to return the favor to all. :)
Anyway, I have been receiving emails regarding links and organizations for Thal Patients in the Philippines. I hope that the moderators in this site could open a new page that would be a 'direct link' to different Thal Associations, Organizationas, or Groups around the world. The Miscellaneous Forums>Thalassemia Associations section of this group has been filled with a number of posts already. That new page I am suggesting could make access to links quite easier for everyone. That is only a suggestion for the administrators of the group. (Andy and Danielle? Hehe! :) )
Well that is all for now. I hope I could get in touch again soon. Please send me private messages if I cant be on-line. Thanks! God Bless everyone!
Always,
Lei :)
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Lei,
Welcome back, I am glad to hear that you are doing so well. I am very happy to hear about your wonderful son.
Did you have thalassemia intermedia? I am so glad that the experimental procedure helped your situation. I hope that it will be helpful to the other thal intermedias on this site as well.
God bless you, best wishes always,
Sharmin
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Lei,
Really glad to have you back :hugfriend i always wondered how were you and your baby doing,and am really glad to hear that both of you are fine :yes keep visiting :) .
Zaini.
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Lei,
I was too wondering about you, and so happy to hear from you again. How time flies, i remember when you posted the pictures of your son after delivery. He look gorgeous by the way, may God bless both of you :hugfriend
manal
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Hi Sharmin. Yes I had Thal Intermedia. I have been back to work so I am really at a loss of time getting on line. Its been 3 years and 7 months since the procedure. I have less than two years that to prove that the procedure can cure Thal Intermedia. Can you believe that I am back on a field work? :) It's a miracle that I haven't had any transfusions since. I am still taking my folic acid medications though. :)
Lei,
Welcome back, I am glad to hear that you are doing so well. I am very happy to hear about your wonderful son.
Did you have thalassemia intermedia? I am so glad that the experimental procedure helped your situation. I hope that it will be helpful to the other thal intermedias on this site as well.
God bless you, best wishes always,
Sharmin
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Hi Zaini! I am back again and I'll be posting pictures of my son again soon. :)
Lei,
Really glad to have you back :hugfriend i always wondered how were you and your baby doing,and am really glad to hear that both of you are fine :yes keep visiting :) .
Zaini.
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Hi Manal! I hope all is well with you too... I will always remember all of you... Thal Pal will always be a part of my and my son's life. :) :hugfriend
Lei,
I was too wondering about you, and so happy to hear from you again. How time flies, i remember when you posted the pictures of your son after delivery. He look gorgeous by the way, may God bless both of you :hugfriend
manal
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Lei,
What was the procedure that freed you from transfusions?
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Welcome back, Lei, and congratulations for the great news!
I hope you and the family stay well!
:)
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Andy I had my son's chord blood more than 3 years ago. I am still taking regular folic acid medication though and I make sure I have enough rest and sleep. I am also taking an average of 500mg to 1000mg of Vitamin C to boost my immune system. I rarely get very sick now. I still catch the flu, I have bouts of asthma, I still have nausea during my menstrual periods but I never had any blood transfusions for more than 3 years or any hospitalizations except my regular blood check-ups.
I still have the Thalassemia (Intermedia) trait, but a healthy lifestyle, a good diet and a good habit also helped me. The catch in what they have done to me is I have to boost my immune system. I also moved out from the city and stayed in the province ever since. They removed stress in my routine.
Before, I used to get Pneumonia after a flu or an asthma attack. Every month I consume 2-3 bags of blood for transfusions. When I run I catch my breath and get nauseous even when I walk long distances. I easily get tired and I'm pale. I even have osteoarthritis.
Now, I can enjoy life and my son. I am not yet Thal free. It is forever in my genes, but at least I have a chance to survive it til I'm forty or fifty now maybe. Doctors used to say I may not even make it to 30, but I am nearing that cut-off so I might as well try it to 40. ;D
I wish Sajid is still here to here my good news though. I used to believe he has a chance. I still have faith though that there is a chance for Thal. All people with Thal do. Right Andy?
Lei,
What was the procedure that freed you from transfusions?
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Thanks! :)
Welcome back, Lei, and congratulations for the great news!
I hope you and the family stay well!
:)
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Andy I had my son's chord blood more than 3 years ago
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Lei
Did you make a transplant using your son's cord??
Andy
Does vitamin C remain in the body all the 24 hours?? I believe so much in vitamin C and its importance during these days (both my kids are having a fever of 40 :wah)
If it is depleted with hours,can i give a high dose to my son between meals instead of the 30mg that is found in the multivitamin
manal
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Ideally, vitamin C should be taken twice daily because it does wash out of the body very quickly. I take mine morning and evening.
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Andy
So if i give my son 500mg daily two to three hours after dinner (usually he will be sleeping at this time), will this increase iron absoarption too or it will be washed out before breakfast time?????
I just want to get the benefits of vitamin C (immunity, antioxidant,.....) without taking the risk of more iron absoarption
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Manal,
Taking C 2-3 hours after a meal won't have much effect on iron absorption. Citrus also should be taken between meals to avoid added iron absorption.
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Thanks Andy
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Wow, welcome back. But you had have your son's cord blood as a transplant? Wasn't that hard for your body?
Dori
a newbie with severe Pyruvate kinase deficiency
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Yes Manal that is what they used.
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Lei
Did you make a transplant using your son's cord??
manal
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hi! i just wanted to say that it's so good to know about your transfussion free life and healthy baby!!
if you're doing well then there shouldn't be any reason that you don't live a normal healthy life as any other non thal! if the procedure you did worked out then that gives great hope for others!!!
good luck and best wishesss!!
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Hi Lei,
Congratulations on the procedure and the outcome :biggrin
Could you please explain the details of the transplant. Were you given a chemotherapy??
Usually the blood in the cord blood is too little for an adult body (that is why sometimes more than one cord is used), so was the quantity suffient to you??
Did the doctors comment about the age? usually transplants are done before the age of 15 years
Thanks Lei
manal
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Hi Manal, another 40yr old I know is waiting for a call from the donor bank for her upcoming stem cell transplant. I say another as I've got another friend who underwent a transplant. Unfortunately she's very ill and fighting for her life.
Lei, amazing. I am very happy for you <3
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Thanks Dore for your reply and i am sorry to hear about your friend. Definetly these procedures give better result at young age. Hope your other friend is making the best decision
Manal