Thalassemia Patients and Friends
Discussion Forums => Working Towards a Cure => Topic started by: Laura on October 20, 2008, 07:15:08 PM
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Hello everybody!!!
I want to talk about something that has recently happened in Spain for the first time.
Last week in Spain a baby called Javier was born. His brother Andrés is a 6 years old child affected by Thalassemia Major. Javier was conceived by genetic selection in order not to have thalassemia and be compatible with his brother. Javier was born on the past 12th October and in 2 or 3 weeks Andres is going to get a bone-marrow transplant from his brother.
I've talked to the parents and they are very proud of their children and very happy because they are completely sure that Andrés is going to accept his brother's bone-marrow and is going to live a normal person's life.
The whole country is happy for them. Well, the whole country but the Catholic Church who said that in order to conceive Javier, a lot of embryos have been killed.
What do you think? Is it worth having a treatment to have a healthy child who could save your thalassemic son or, according to the Catholic Church, we should accept what we have and do not think about finding other ways of getting well? What would have happened if it would had been your country? Would your religion have accept it or it would have said something against this "treatment baby"?
I'd like to know your opinion it because these days I'm hearing lots of people talking about this and giving their opinion without even knowing what Thalassemia is.
Thanks,
Laura.
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Laura,
I don't know about religious point of view,but personally i think that it's totally normal,there is nothing wrong with it,a child is getting a cure well deserved,how could we say that it's un ethical to give a kid a chance to live normal,with out a disorder.At least this is what i think.
Zaini.
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Hi Laura
I live in Spain too and the true is that this news was very commented here.
I personally accept this form of cure and am vary happy for this family and hope everything will be ok with their children and with other which are in the program too. If I was in the place of this parents i would do the same and i don´t think that is wrong decision.All we want the best for our dear persons and is our obligation to try all the ways, all the advances that the medicine ( traditional and alternative) gives us and if the facundation by selecting embryons is one of them to cure one child and have other health kid I think that its great oportunity and if the situation and the family accept it. Why not? And my best regards for the family for the courage and no matter what will say one or other person.
I´m christian too, but christian ortodox, not catholic, I belive in God and I´m religios but, in this case I don´t agree with the church. By personal poit of vew i don´t accept abort, but in the case it´s embryons, and it´s the only way that exist for the moment for cure about Andres, because they, haven´t compatible donor. I don´t think that the people have to speak about if it´s ethic or not, because it´s not question for example by select between one or other type of cure.
Many familis concive babys by invitro, for example in IVM they prepare the max number of embrions but not all tha embryons are selected, this who was´not selected are conserved in bank for 2 years, and if the par wants to save them for more time they make new declaration and can conserve them 6 years more. So when pass this 8 years if they did´t use the embryons they have to decide if the embryons will be destroyed or also can donate them to other par.
That´s the protocol in my country, I don´t know in details about other countrys, but if everything is in order of the protocol I don´t see nothing wrong in concieving baby by this way.
It can be vary good way for other familys to cure their kids or have other health and also for patients to have health kids, and i think that it´s great.
If you´re interested in this theme in the document section of the forum I published one course of thalassemia and in it there is a lecture of Dr. Skourdis (which was one of the lectures in Singapure) you can find more information and even there are 2 cases in the world that thal moms have 3 tweens (sorry, i don´t know the word, in spanish is trillizos)
It´s sad that from a good news like this about the big advance of the medicine here and the most important about this family and many others, in place to talk about that, and the thalassemia the most of the people even did not knew that its so big advance in the treat of thalassemia and what exactly tha talassemia is. And also was sad that in the TV there was so wrong information about the disease.
Now i´m doing one studys in one course and practice in one of the biggest hospitals in Madrid and talked on this theme with one of my lectores when it was anounced the news.
She is doctor, and works in Ministry of health, but also is mother and catholic, but no matter she is catholic she didn´t accept the point of vew of the church.
I dont´n now about the religion point of vew but from human point of vew this advance is something very positive, and if this advance can be accessible for more people that need it, it will be great.
Many times we judge, but until we are not in the situation that we judge or in other similar we can´t understand and so many times judging we make mistakes, but like people says " It´s human make mistakes, and divine forgive.
I hope Javiers family will forgive and wish them and the others all the best
Best regards
un abrazo muy grande :) :hugfriend
Tsveta
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Hi Laura,
well Im muslim and if I was in these perants shoe I would do what they did for both of my kids to live happy and healthy and have each other in life after I'm gone.
but you've mentioned :Well, the whole country but the Catholic Church who said that in order to conceive Javier, a lot of embryos have been killed.
and in Islam we have that its against our religion to kill an unborn child UNLESS there is a danger on the mother.......
but you're saying that the baby wasn't killed he just went under sugery to help his brother so its a happy ending god bless :biggrin
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is it right?? or its wrong.. what bullshit. ask the parents what they had been through to see there little angels getting pricked and pricked. then liver check. heart check. cbc.. ferriten level.. other can just simply comment in the name of god, humanity. bull shit. isnt living healthy life is the god way? or suffering till end would be justified by church people?
an embryos or many were killed. they must have felt pain? did they, or they were consious right? saving a life is beter or this would be wiser?
well. what ever. i support parents for there bold steps and my action .. to give more moral support as what they been through till the time and the time coming up..
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Hi Micky,
How's Kabir doing?
Zaini.
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What a beautiful thing - a baby being born and curing his brother at the same time.
Mickey, I hope our adorable Kabir is doing very well. God bless.
Sharmin
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This is an issue that this group does have an official stance on as we carry on the legacy of Lisa Cammilleri. Not only would Lisa have strongly supported the use of IVF to implant embryos that could lead to the birth of a child who could be a donor and provide a cure for its sibling, but Lisa would have also been in favor of using the unused embryos in stem cell research to help find a new cure for thalassemia and other illnesses. As caretakers of Lisa's group, we have a duty to represent the beliefs that Lisa had on this subject.
A woman loses an egg every month. Nobody cares. Take that egg, fertilize it in a laboratory and suddenly many people have some great conflict. Mickey, you're right. It is BS.
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I totally agree with you Andy.......it's really nothing to have an issue with I mean if it could save more lives why not right???? :wink
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It is a very long time now that I don't come here :dunno
My brother and my sister-in-law are in the situation of these parents.
They are expecting a baby conceived by in vitro fertilization. The embryo was "selected" for its compatibility with my goddaughter (their daughter) but also for the fact that he or she is not thal. The birth is scheduled for late April and the pregnancy is going well for now.
For now, they do not want to proceed with the transplantation of stem cell because of the cumbersome therapy around the transplant. The umbilical cord blood will be retained until my goddaughter decides to intervention. Her parents do not have the courage to take this decision, something the whole family respects.
This child is awaited with great impatience and love. First, because it will reconcile my brother and my sister-in-law with the miracle of life and secondly because it represents the hope of a possible cure for their daughter, Sarah.
It is the first time that a baby will born in these condition in Belgium.
May I ask you thoughts and prayers for my family ?
Thank you. :hugfriend
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Wishing the best best best luck,I am very happy for your brother and sister in law,we are here to support them :hugfriend,best of luck with the little angel.
Zaini.
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Our prayers are with your family :hugfriend
:pray :pray :pray :pray :pray :pray :pray :pray :pray :pray :pray :pray :pray :pray :pray
Sharmin
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Hi Lili,
So nice to see you back. :smileblue
I think it is a very hard decision to decide for bone marrow transplant, especially when the child is doing well with treatment. I hope the parents never feel pressured to make a decision. It is one that can only be made after much thought, consultation and prayer. We wish the parents the very best and and look forward to hearing about the birth of the new child.
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Wishing You best of luck , May God shower his blessing on you and your child and bless your child with good health and successsful treatments .. :pray
Umair
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Hi Sharmin
My prayers are with you and Little"" A" I hope he is better today,
I know how worrysome it can be; be patience he will be better soon.
I , too, worry about my two of adult sons they are always sick with something or another they 've been diagnosed with thal minor and one has sickle cells traits,
Everytime they are sick I feel so guilty and I apologize to them .they will tell me Mum it's not your faults,So I know how it feels to watch and feel helpless.
It appears that the doctor is not helping them .same response as I got. Its asymptomatic not to worry,
My only salvations is prayers and hope for the best,
Kathy
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Thank you Kathy, he is actually feeling better today. Thank god his hg held up through all of this.
We can be tough on ourselves about passing on the genes. The reality is that we cannot help the fact that these genes have been passed on anymore than our parents could have prevented passing them on to us. All we can do is raise them properly and take good care of them while they are young - which I am sure you have done for your boys:)
Thanks again Kathy,
Sharmin
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Thanks to all of you :hugfriend :hugfriend
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Hi Lilibel
my and may family´s thoughts and prayers are with You wishing your family all the best.
:pray :hugfriend :hugfriend
many kisses for your goddaughter :goodluck
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Hello!!!
I just want to tell you that Javier is fine and that Andres is going to have his bone marrow transplant in 2 or 3 weeks. I talked last Friday with their father and he told me everything is going well.
I told him about this forum and he entered, but since he doesn't speak English he has asked me to tell you they are very happy. He also told me that if you have any question about how is everything going maybe I could translate it for him and post back the reply in the forum.
Have a good day!!!
Laura.
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Dear Laura
Thank you for the update. Please tell them that we wish them good luck and that we back and support them in all their steps.
It will be great if you update us with their situation every now and then
Take care
Manal
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Ok! I'll do it.
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Hello!!!
I have news about Andrés!
Andres has been admitted today in order to have his bone marrow transplant.
I'll tell you more as soon as I'll know.
Best regards,
Laura :hugfriend
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Muchas gracias por la nueva información
Por favor, déles mi amor y ayudo a ellos :)
Buenas noches, Dore
p.s. Normally I do know more Spanish! Please, correct my mistakes.
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Dear Laura,
I hope that everything goes smoothly for Andres.
Please keep us posted.
Sharmin
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Wishing the family all the best.They will be in my prayers
manal
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I hope everything will go fine with him,my prayers are with them.
Zaini.
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Laura ,
Wish them alll the best of Luck/good luck on my behalf and pleas keep us updated :goodluck
Best Regards
Take Care
Umair
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I wish Javier and Andrés and their family good luck and I hope everything will be ok. Our support and prayers are with them too, wishing all the best.
:hugfriend
Best regards
and thank you Laura, for the information :hugfriend
besos
Tsveta
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Thank you for all your good wishes. I'll transmit them to Andres (father).
I'll tell you more about them as soon as I have more information.
Peartree Girl: your Spanish is good. I'll copy your post in the email I'll send to Andres.
Kisses,
Laura.
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Hello everyone!!!
There are some news about Andres. He's ok after the transplant. This is the only link in English I have found about this. There are lots of them in Spanish because it is the first case in my country, but the press conference took place today and the international medias haven't noticed yet.
http://www.iol.co.za/index.php?set_id=1&click_id=31&art_id=nw20090313181043594C740012
Kisses to you all.
Laura.
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Hi Laura ,
Thanx for the link and for an important update ... its a ray of hope for thals ...
Best Regards
Take Care
Umair
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I am so happy for all the family, I do hope everything continues the best it can be, May God bless them all, thanks Laura for the update
manal
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Thanks for an update Laura :hugfriend i wish this little boy health and happiness.
Zaini.
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Muchas Gracias. At wednesday I get my email from MedicalNewsToday so I will look of they report it.
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Yesterday i was in the bus going to my work when in the radio i listened the news about Javier and Andres, i was so happy for them and their family and so i coudn´t hide the emotion and coudn´t stop the tears of happiness and hope that escaped from my eyes ,and later called to my country to share the good news with my family.
Laura, please send the boys and their parents best regards form me and my family and big embrace
wishing them all the best and the same for the other families that are in the same situation
kisses
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Hi Laura,
Thank you for sharing this wonderful story. God bless the boys, I hope that Andres cruises through this procedure and leaves thalassemia behind him forever. God bless,
Sharmin
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Hi all,
please let we pray for Nasko and Martin- two boys form Bulgaria that will have the BMT soon. One of them has it for tomorrow.
Today I told with my friend in the bulgarian association and she told me that.
Please i want to ask for your prayers, let the toughts and prayers of more people are with them and their familys in this moments and hope everything will be ok.
Thank you all
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Carini,
I am praying for both boys to have success and to survive this procedure event free.
God bless,
Sharmin
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May God bless them and help them and their families in this situation, they are in my prayers
manal
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May they leave thalassemia behind in their lives.
Zaini.
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Hi all,
please let we pray for Nasko and Martin- two boys form Bulgaria that will have the BMT soon. One of them has it for tomorrow.
Today I told with my friend in the bulgarian association and she told me that.
Please i want to ask for your prayers, let the toughts and prayers of more people are with them and their familys in this moments and hope everything will be ok.
Thank you all
Will they have their bmt in Spain? Do you know their age?
They will be in my thoughts and I really hope for the best. :thumbsup
:goodluck!!!
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When I hear Bulgaria I think about Romania. A friend of me lives there and I will go to Romania during summer but, have you heard about the thalassemia boy who moved which his parents to Australia? Australia sent the whole family back so soon as they found out out that boy had thalassemia. They said too expensive and it's not a good reason. I am still shocked about that. The boy has more opportunities in Australia and above all his parents could not pay his treatment in Romania anymore.
This happend two years ago, or more, and so far as I know is the boy still in Romania. He has been on the Romanian tv to collect money. I will ask my friend of he heard recently something about this guy in the media.
Our past minister of Integration and Immigration send a two year old twins with their mother back. Those twins has Sickle Cell Anemia and have no chance in this African country. It is still a shame. The sc and thal. organisation has fight for them, but no success.
Dore
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That's interesting. I have been involved in a case for a couple years trying to help a family from Romania stay in New Zealand. The family did not declare the boy's thal when they moved there and the government has been trying to expel them. The new trial is this month.
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That's interesting. I have been involved in a case for a couple years trying to help a family from Romania stay in New Zealand. The family did not declare the boy's thal when they moved there and the government has been trying to expel them. The new trial is this month.
I will send my friend now an email and ask of he knows to which country they (try to) immigrate. The boy must be in his teens. I think his now around 18yr. Maybe we talk about the same. And please, keep me update about the trial.
As for Australia. Have you heard about the case of the German doctor who moved to A. to be a doctor in a very rural area? Australia refused to give the family permission to stay, because of his son who has Down syndrome. There were (ofcourse) lots of protest and Australia has changed their mind.
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The boy I know is around 11 years old. It's a bad situation. He cannot get the same level of care back in Romania. His little sister is named after Lisa. Lisa helped the family when they were still in Romania. They won the first court case but lost the second and now things look bad for the new trial.
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The boy I know is around 11 years old. It's a bad situation. He cannot get the same level of care back in Romania. His little sister is named after Lisa. Lisa helped the family when they were still in Romania. They won the first court case but lost the second and now things look bad for the new trial.
I found it. I will wait for the answer from my friend, but we definitely talk about the same person. This was/is my source:
y REBECCA PALMER - The Dominion Post | Tuesday, 6 February 2007
The cost of providing continuing treatment for the 11-year-old boy could climb to $5 million if he lived till the age of 50, Auckland District Health Board staff told the Deportation Review Tribunal.
The tribunal found his parents had deliberately withheld information because they wanted better treatment for their son than he was receiving in Romania. But the family will be allowed to remain because the boy’s health was at risk if he was sent back. “We accept that prioritising and allocating funds for healthcare in New Zealand are indeed matters of serious public concern, however … the humanitarian factors in this particular case outweigh any of these other considerations,” the decision says.
Adrian Vilceanu has the serious inherited blood condition thalassaemia major, which requires him to have monthly blood transfusions and injections five to seven times a week. His parents, Romanian citizens Cezar and Constanta Camelia Vilceanu, applied for New Zealand residence in 2001 - after their son had already received several blood transfusions in Romania.
But during a medical examination in their homeland to support their residence application, they incorrectly answered “no” to four questions about his health. The family told the tribunal they believed they had a duty to give their son the chance of “a normal life and a healthy environment”.
In Romania, his life expectancy was about 20 years, while he could live to more than 50 in the “right conditions”. They were worried the Romanian blood transfusions would be infected with HIV and that funding problems meant the chelation injections he needed to remove iron build-up in his blood would not always be available.
Adrian received his first New Zealand blood transfusion shortly after the family arrived in 2004. Immigration authorities launched an investigation after being contacted by staff at Auckland’s Starship children’s hospital. The immigration minister ordered the family’s residence permits be revoked but the family appealed.
District health board staff estimated the cost of Adrian’s medical treatment between January 2004 and January 2006 at $57,000. Treatment could cost up to $5 million over a 50-year life span. The tribunal noted Romania’s health system was underfunded and subject to corruption. Adrian’s doctor told the tribunal Adrian was thriving in New Zealand and any interruption to his treatment would be dangerous.
Adrian’s parents, who were highly educated, had brought valuable skills to New Zealand, the tribunal said. Mr Vilceanu was working as an aircraft engineer while his wife, an economist in Romania, was caring for their New Zealand-born daughter, who is healthy. The tribunal noted changes to blood-testing requirements meant it was no longer possible for potential immigrants to arrive in New Zealand without authorities being aware of such a disorder.
The tribunal allowed a Bangladeshi family who obtained residence through false information to stay because of their 15-year-old son’s deafness. They have been in New Zealand for 10 years and the tribunal ruled it would be unduly harsh to send the deaf son back to Bangladesh
Source:
Stuff.co.nz
As I understand it right then they are still in Austrlia. It is cute to here about the name of his little sister.
I wish I could do something,
Dore
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Thank you for your prayers and support , i am sure that this help a lot,
Dore, the boys are 5 and 12 years old and the donors are their little brothers, the BMTs are in Bulgaria, not in Spain.
I dont know the case about the rumanian boy and this case in Netherlands that you are tolking about,but i hope this families have found some solutions and the children and their families are ok.
And yes, generaly in Bulgaria and Rumania the health system is not very good, ( i don´t know much the rumanian health system but i do know the bulgarian) and it can´t offer the same treatment for TM like in other counties, there are problems with the medicine and the necessary doses, but the assotiation and the patients are faithing to change this and hope soon the results be visible.
And thank you all again for your prayers, especially now accompaning the families of the boys in this process
God bless :hugfriend
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They have never been in Australia. They are in New Zealand. Ady was a very special friend of Lisa's and I have tried to help with this case for a couple years. I have posted about it before.
http://www.thalassemiapatientsandfriends.com/index.php?topic=726.msg5621#msg5621
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Hi guys,
I live in Australia, and I would like to point out that despite of the stringent immigration laws,
I pride myself that I also live in a country with a fair Justice system,
Usually when those unfair judgement is set by the immigration department ,the welfare group comes in and advocate ,they contest , and 99% of the time defendant wins its case, and they stay in the country.Under humanitarian ground.
Having said that , I would also like to point out that the sick and the weak, usually carries no, voting power, therefor in the scheme of things, they, can be overlooked in" any society"
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This is why there are organisations that protects underprivileged in our society.
Australia are no different from any other country or may be even better than some because of there equal opportunity Laws in Placed.
I hope I have clarify few misunderstand that we might have.
Kathy.
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Hi guys,
I live in Australia, and I would like to point out that despite of the stringent immigration laws,
I pride myself that I also live in a country with a fair Justice system,
Usually when those unfair judgement is set by the immigration department ,the welfare group comes in and advocate ,they contest , and 99% of the time defendant wins its case, and they stay in the country.Under humanitarian ground.
Having said that , I would also like to point out that the sick and the weak, usually carries no, voting power, therefor in the scheme of things, they, can be overlooked in" any society"
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This is why there are organisations that protects underprivileged in our society.
Australia are no different from any other country or may be even better than some because of there equal opportunity Laws in Placed.
I hope I have clarify few misunderstand that we might have.
Kathy.
Did i give you that feeling? I do know a few things about the immigration laws in your country. I am pretty involved in our immigration laws, so I know the rules of this game a bit. And yes, this case could be happening in any part of the world. I think you try me to convince about that? There is no need to convince me about that.
Dore
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Dore.
I was not convincing you or anyone for that matter.I was trying to defend the reputation of my adopted country as a citizen of Australia I have the right to protect my country from" innuendo"
You might know,all, but I know about loyalty, despite of my ignorance I will not allow any body to be derogative towards any things that I held close to my heart. (My country is one of them)As A matter of fact I wasn't hurt untill you post back and told me you know it all . good luck with this attitude you will get very far,
In the future please refrain yourself from addressing me I shall not interact with you anymore.
I don't come on this forum to get abuse from you ,Each time a person dont get my message they single me out and abuse me I wonder why ??? ??? ??? ??? ??? I start to think that you people bait me for that purpose."Shame".That is not the first time this happen.I am not keeping quiet anymore .I sick of being the forum scapegoat.
I chose this forum because I thought I had some friends and I could have some kind of support with my illness and interaction with people who has the same kind of issues with thier health .Obviously the likes of you make it impossible.
Kathy
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Dear friends,
You are both very valuable on this forum. Dear Kathy, you will always have friends here who care a lot for you. Your well being is very important to us and your input is always welcome. Dore, we learn a lot from your knowledge bank and research.
Sometimes it is very difficult to communicate using a common language - one that is not everyone's first language. Without facial expression and tone, phrases sometimes appear to be very direct. Sometimes, it is nearly impossible to predict someone's intent. My hope is that no one meant any harm or disrespect toward one another. I also hope that no one is hurt and that we can all continue to support and learn from one another.
Dear Kathy, I hope that you are feeling well and that your family is also doing well. Dore, I hope that your studies are going well. We are all here to bring out the best in one another :grouphug
Sharmin
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I totally agree with Sharmin and i am very sure that no bad intentions are meant from any side, we all do respect each other. To all my friends accept my sincere respect and love
manal
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Well said Sharmin,
You are totally right that with the language which isn't our first one and just with the writings of each other,it gets hard sometimes to understand what the other person is saying,so please give each other the margin of this.
Kathy,
We have always valued your opinions and i love reading your quotes :) .
Dore,
I love your thirst for knowledge and your frankness :)
Love you all.
Zaini.
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Fully agree with Sharmin. Most of the time i too need to edit my post in order to make my post say what i meant to say.
I am sure no one here comes and post with any intention of proving his/her knowledge and capabilities.
Cheers!
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Kathy,
Now I don't understand it anymore. :dunno English is not my mother langauge, so I miss the perfection for playing with the words as I have with Dutch. So there must be probably something wrong with the intonation. Most of the time is it good, but my personal situation sticks his nose in it and then I get lost.
And Kathy, you are not the scapegoat!!! I really love to read your posts, especially the ones in your topic about quotes.
Please accept the apologies of this scapepear,
Dore
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Fully agree with Sharmin. Most of the time i too need to edit my post in order to make my post say what i meant to say
:exactly :agree to Sharmin, Zaini and Tariq .... almost everytime i need to edit my post to make my post or to say wat i meant to say ..... bcoze English isn't my native language ... a few times i love to write a note for the people to understand wat i meant to say and then explain that hehehhehehe .......
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Dore :hugfriend :hugfriend :hugfriend
Zaini.
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Dear Dore,
I too. I apologize for my outburst.I think that I have over reacted.
:flowers :flowers :flowers
This morning I was very upset with myself and I suppose I vent it out on the wrong person.
I am not feeling well at the current moment. take for example,,,,,,, this morning I burnt my kettle beyond recognition I forgot that I put the kettle on the fire for my morning coffee.
I've been missing time and when it happen, I seems to completely forgot about what I'm suppose to be doing ,this frightened me because I feel i'm losing my memory and I dont know how I will manage, I'm here alone with no close relatives other than my sons and they are busy with their lives.
I think the illness is taking its toll on me and it leaves me angry , bitter and very fustrated,
it comes down to I don't like myself and what I'm becoming.
I dont know much, but I'm sorry if I have said stuff that might have hurt anyone.
I know you genuinely care for me, thank-you all for your friendship. :hugfriend :hugfriend :hugfriend
I do care too again I'm sorry.
Kathy
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Kathy :hugfriend
I am sorry you are not feeling well,but i am sure these small mishaps happen with every one from time to time,you are not loosing your memory :console.I hope you'll feel better soon. :flowers
Zaini.
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Dear Dore :hugfriend :hugfriend :hugfriend
Dear Kathy, I hope that you feel better soon. Please be patient with yourself, when you are sick the last thing you need is to get angry with yourself. I know that you are an intelligent and caring woman and you always expect the best from yourself - but we can't always be perfect and that's when we need to take it easy on ourselves. Even though you don't have family around, I am glad that you have us - so keep posting and keep smiling my friend. We love you :hugfriend :hugfriend
Even though English IS my first language and I mess it up sometimes :dunno - no big deal as long as we know that our heart and intentions were in the right place :heartpink
Sharmin
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Dear Dore,
I too. I apologize for my outburst.I think that I have over reacted.
:flowers :flowers :flowers
This morning I was very upset with myself and I suppose I vent it out on the wrong person.
I am not feeling well at the current moment. take for example,,,,,,, this morning I burnt my kettle beyond recognition I forgot that I put the kettle on the fire for my morning coffee.
I've been missing time and when it happen, I seems to completely forgot about what I'm suppose to be doing ,this frightened me because I feel i'm losing my memory and I dont know how I will manage, I'm here alone with no close relatives other than my sons and they are busy with their lives.
I think the illness is taking its toll on me and it leaves me angry , bitter and very fustrated,
it comes down to I don't like myself and what I'm becoming.
I dont know much, but I'm sorry if I have said stuff that might have hurt anyone.
I know you genuinely care for me, thank-you all for your friendship. :hugfriend :hugfriend :hugfriend
I do care too again I'm sorry.
Kathy
Tadaaa :flowers
We'll be in touch by personal message. I dunno when, but time will tell me. I think I may say that I know how you feel.
I hope you feel better soon. I dont know of it helps, but I try to write once a week in my diary (after 4 years). Now I know that I dont have to remember everything; it's in that book. There is a song by Maria Mene wherein she is singing that she thinks too much. The music has a lovely little tune. I dunno why I say that.
:hugfriend
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Goodmorning to all,
Today is another day I pray for courage and strength for me and everyone on this forum.
Thanking god for having all of you special human beings in my life
THANK_YOU seems so little still is the appropriate word to say my sincere gratitude goes to
Dore :flowers
Zaini :flowers
Sharmin :flowers
Manal :flowers
Tariq. :grouphug
Im glad you are all there and I didnt meant to take you all forgranted,
Kathy
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Dear Kathy,
It is all one day at a time for all of us - I hope that today is a good one my friend :flowers
Love,
Sharmin
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Bipolar disorder is an illness that affects thoughts, feelings, perceptions and behaviour ... even how a person feels physically. It's probably caused by electrical and chemical elements in the brain not functioning properly and is usually found in people whose families have a history of one or more mental illnesses. (While we're at it, let's be clear about something: a "mental illness" is one that affects the mind, not one that's all in the mind.)
Bipolar has one of the highest mortality rates of all mental illnesses. One in 5 patients die by suicide. Often alcohol & substance abuse are common in patients with bipolar disorder. Panic disorder, ADHD (attention deficit hyperactive disorder) & BPD (borderline personality disorder) are also associated with bipolar.
Kathy
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I am really so happy that today everyone feels much better and i was sure that it was going to end this way cause we are really all good people from inside :wink :biggrin Hats off to Kathy and Dore, i love you so much :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend
manal
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Bipolar disorder is an illness that affects thoughts, feelings, perceptions and behaviour ... even how a person feels physically. It's probably caused by electrical and chemical elements in the brain not functioning properly and is usually found in people whose families have a history of one or more mental illnesses. (While we're at it, let's be clear about something: a "mental illness" is one that affects the mind, not one that's all in the mind.)
Bipolar has one of the highest mortality rates of all mental illnesses. One in 5 patients die by suicide. Often alcohol & substance abuse are common in patients with bipolar disorder. Panic disorder, ADHD (attention deficit hyperactive disorder) & BPD (borderline personality disorder) are also associated with bipolar.
Kathy
Kathy, thanks for sharing this with us it helps us understand and support you better :) I am very sorry to hear that you go through all of this, please know that we are always here for you.
Sharmin
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Kathy, were you diagnoised with bipolar depression by a professional doctor? If yes what medication you are on??
Wish you a wonderful day dear and by the way don't worry about misssing things cause 99% of things i should do i just forget and when this happen i know that i am tired, this is the first symptoms of being tired cause when we are tired we lack concentration.
much love too you my friend
manal
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Kathy, were you diagnoised with bipolar depression by a professional doctor? If yes what medication you are on??
Dear Manal,
yes I've been diagnosed by a psychiatrist and I'm still under her care,
NO I'm not on medication, My LIver and KIdney is already damaged and It is not wise to take psyc medications,
I don't need medication I'm not a threat to society, only a treat to myself, For thirty years I hold a job and could cope okay it seems that as I get older gone through menopause it has worstened top it with sickle cells and thal minor its all too much.compound with
Diabetics , Livers and kidney disease doesnt help either,
Most of the time I'm in control but at times I just lose it and this is the time whem i need to recognise and sit it out.
Kathy
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Kathy, with all what you said, the only thing i see is that you are a true fighter, I hope one day you can find a doctor that is really able to understand, but until then you shouldn't worry cause you will find from us all care, love and support for granted :hugfriend
manal
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Dear Manal,
I posted about my mental illness inorder to bring awareness to everyone that having Sickle cells and thal gene can and it affects every parts of ones' life if left untreated for so many years it can be detrimental in the later years of the sufferers lives.
I firmly believe that it all happen when my bloodcells is in reproductions and my organs e;g brain, ect, is not getting oxygen, take it into considerations that most of the time sufferers of this illness function on 50%of oxygen in thier blood in comparison to a normal healthy body without this illness ,
I also like to bring awarenes that we need to treat our children with lots of love and dignity so that in the later years of their lives they recognised and know thier selfworth and can cope with what life deal to them.
Yes I do believe I'm a strong person otherwise I wouldnt have survive untill now,
Nonethe less despite of my age I'm still learning about life and I hope in the process I can make a contribution to humanity by talking about my life experience and my struggles.
I know young children need the most attention and by no mean give them,I'm not here to outshine them I can never do that.
I found that in society in general people don't have time for people like me and others with mental illness,we are classified in little compartment and outcast in society, just because there has been taboos and the disregard of thier personal human value .
By now I dont expect or really need validation, I know who I am, but from time to time I feel, I have the need to be part of the human race that is because most of the time " I"M HERE" :wink
I hope I am making myself understood thank-you for being there and maybe the next mental ill person you all meet will get a nod :biggrin
I conclude this posting by wishing you all good fortune in life, make the most of every opportunity that arises because tomorrow is promise to no one,
I care
kathy
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Thank you Kathy, i always learn a lot from you :hugfriend
manal
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Kathy,
I hope you are feeling fine today :hugfriend.
May i ask if you are taking any supplements,i know there are already many pills in our lives :biggrin but i feel that taking good supplementation will help you especially with your energy levels.
Much love :hugfriend
Zaini.
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Hello,
Lots of things have happened since I wrote fot the last time about Andres and Javier. I hope all of you are ok again in a short time and I'm glad that the forum is again a pacific place.
About Andres, he's ok, I'll transfer all your support again to the family.
About the boys having the transplant, I hope everything goes right and they leave behind thalassemia.
About immigration because of thal or other diseases, I'm going in 5 minutes to see my colleage of thal in my hospital. He's a boy of 10 years old. He's from Bulgaria and came from there in September with his family. They just moved because they thought the kid was going to have a better medical attention in Spain. I don't know the reason why some countries still refuses ill people (I believe it is just a matter of anciety of the laws), but within the European Union there is no problem to move from a country to another. I think this is the way this should be in general but it is very difficult to make politicians understand something like the need to emigrate because of the medical care (I do participate from a political party and I can tell you that it is very difficult to make them see the problem of the Health System in some countries and the reason why people come here since we have a public system and everybody have access to everything).
Well, again I thank you your good thoughts about Andres and I'll give you an update as soon as I have more news.
Kisses to you all!!!
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Hi Kathy ,
i m sorry to hear abt wat you are going through , about memory i m also a little bad at memory , oncle i took double dose of ferriprox bcoze i forgotten that i have taken it .. soo its not a big probleme ... i hope you wil find the way to cope with it as well as you coped with Thalassemia and other probs .... i hope its a better day at your side than the past ones ....
the only thing i see is that [bgcolor=#ffffff]you are a true fighter[/bgcolor]
Manal, its not fair, r u saying this in context of wat happened a few days ago ???? hehhehehe :rotfl :rotfl :rotfl :rotfl :rotfl .. Manal & Kathy , i m just kiding, soo please Dont mind it ...
Best Regards
Take Care
Umair
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Thanks Umair
You're funny :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl.
You will keep
Kathy
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Your Welcome Kathy ,
but now i want to rotate the strike ( like cricket , batsman take single run to rotate the strike and it considered as the best strategy in cricket ) now its your turn ...
Best Regards
Take Care
Umair
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Tomorrow is the transpoant of the other boy- Nasko, and i want to ask for your prayers again.
Let we pray to goes everything right for him and the doctors realize the transplantation by the most correct and successful way for Nasko.
And everything to go right for the both boys.
Thank you for your taughts and prayers, this support is very important. :hugfriend
Best regards, wishing all the best for all and everyone. :hugfriend
P.S Laura, I, am form Bulgaria too, but i live in Spain and i am doing my practice in one hospital in Madrid, please send regards from me to the bulgarian boy in your center and his family, and tell them that they can caunt with me for everything that is in my hands.
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They are in my prayers, i hope everything goes well for both of them, please carini update us
manal
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My prayers are with the family. Please do keep us posted.
Sharmin
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Always Praying for them :pray
Best REgards
Take Care
Umair
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(http://i274.photobucket.com/albums/jj273/88michellemc/sympathy4.gif)
Zaini.
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Carini,
Please let us know when you have an update available.
Thank you and god bless,
Sharmin
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I hope everything went ok with the transplant.
Best wishes for the boys.
Laura.
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Hi all,
and thank you again for your prayers, and regards for the boys, I will tansmit them though my friends to the boys.
The transplnat of Nasko I thought had to be yesterday, but yesterday when I asked my friend for him she told me that the preparation was delayed. Probably the BMT will be for 7th of April.
He started the chemo in Sunday and also they now put desferal with the pomp.
Marti, the other boy, had his BMT last Monday and for the moment everything goes well. Now his leucocytes are on 0, from tomorrow, expet to start raise them.
They transfuse him thrombocytes and for tomorrow -the R mass.
His hb was on 113.
I will keep update when I know more. And thank you again for your prayers, hope everythin goes well.
By the way this Saturday is Marti`s birthday, and on 30 of this month is the birth day of Nasko.
Best regards and big embrace for all. :hugfriend
Tsveta
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Thanks for an update Tvesta,
I am praying that everything goes well with both the boys,wishing them a birthday full of joy and health in advance . :hugfriend
Zaini.
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Thank you for the update, Tsveta.
My fingers are crossed for them and they are in my thoughts.
:hugfriend
Best wishes, Dore
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I pray for the boys, I hope that everything goes well.
Sharmin
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Hi all,
today was the BMT of Nasko, and it went ok,For the moment i don´t know nothing more, my fingers are crosed for him and hope everithing keeps going ok-
Since some days Marti started to raise the leococytes,and it is a good sign.
I don´t know detaisl this is the only thing I know for the moment.Hope everithing keeps going well and soon have more good news for the boys.
Thank you all, for your prayers and support always
Today is the universal day of the health, want to wish health, good solutions,new happiness and joy for everyone. :hugfriend
Tsveta
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Thank you for the update. Love, Door
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I am praying for the boys, I can imagine how hard the situation now for their parents. I really wish everything goes well. please keep us updated
manal
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Thank you for the update - I pray that the bmt goes as smoothly as possible for the boys and their families.
Sharmin
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(http://i105.photobucket.com/albums/m211/nelliesina/Sympathy%20and%20Prayers/2521cid255F12cd01c622db25243c0fd2d0.jpg)
Praying for the boys.
Zaini.
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It is a really very good news for me as we are also thinking about such a process for our affected baby. now can you help me by informing that, is the affected baby of spain now living a normal life after this treatment?
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Are there any updates on these boys? Praying for their safe recoveries.
Sharmin
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Hello!!!
I'm glad to inform you that Andres is already compleatly healthy. Doctors discharged him from Thalassemia a couple of weeks ago.
I'll tell you more about it as soon as I'll be able to talk to the family. We are all now in holidays and it's being very difficult to find them on messenger.
Kind regards,
Laura.
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Laura,
Thank you so much for this update!! I am so glad to hear it!!
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Hello everybody!!!
I didn't have much time to write the last months but I'm here again.
First of all, I want to inform you about Andres. He feels perfectly and his family is very happy with that. There's been no problem with the process and the kid barely remembers about the blood transfusions.
There's no more to explain since good things are usually the shorter to explain.
Andres' father asked me to thank you all for all your support during the whole process.
Kind regards,
Laura.
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Great news!!!! :-D
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Excellent !!! :happydance
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Such wonderful news! I am so happy to hear it!
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Please tell him that we are all so happy for him and wish him and his family all the best
manal
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Hi everybody!!!
I'll tell Andres about your posts on this topic. He told me some time ago that he really appreciates your interest on their case.
Kind regards,
Laura.
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I do not support abortion but I do support trying to save your child. My son is transfusion dependant and we just found out his brother is a 10 out of 10 match to him. I am a christian and a christ follower and don't think things are always as cut and dry as the catholic church wants it to be. I think it's an individual choice between a family and God. I don't believe there is a right or wrong answer and personally... I'm sick of the rules that come from the catholic church.
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One thing these parents knew when they proceeded with the pregnancy with their youngest child is that they would love it with all of their hearts. The fact they took advantage of medical technology to possibly do something wonderful for their older child has nothing to do with the fact the youngest is wanted and loved, regardless of the outcome. If the youngest baby were actually older than the child with thalassemia, and told it could possibly change it's siblings life, it would feel blessed and honored.
Whether one is Catholic, Christian, Mormon, or a religion of one, we know one thing God commanded was to love one another. This baby was born to love, and will have some wonderful tales of it's beginning for the grandkids!!!!!! What other explanation could there be for this family to endure all of this than LOVE!!!!!
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That's right!
Each member of Andres' family loves Javier (the baby) for who he is and not just because his bone marrow was used to help Andres. That's in the past and everybody will appreciate it in the future but he's really being a normal baby and, as their parents say, Javier is going to be treated the same way as any other baby they could have may be treated.
Kind regards,
Laura.
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I only read it now. I am glad all is going well
:hugfriend