Thalforum - Thalassemia Community Forum http://www.thalforum.ca/forums Thalassemia Forum for patient friends and families connected to this genetic blood disorder and taking blood transfusions and iron chelation using desferal, khelfer and exjade en Sat, 31 Jul 2010 06:11:33 GMT vBulletin 60 http://www.thalforum.ca/forums/images/curves/misc/rss.jpg Thalforum - Thalassemia Community Forum http://www.thalforum.ca/forums Need your advice please http://www.thalforum.ca/forums/thalassemia-intermedia/1956-need-your-advice-please.html Thu, 29 Jul 2010 21:18:11 GMT hello everyone, i have been a member for some time but havn't posted in some time. I do have a question or a dilemma depending on your view so here it is.. Ive recently visited a few hemotologist a couple months ago and the conclusion was not what i was expecting. i was hoping for a regimented transfusion because my hemoglobin has been dropping slowly for the past few years. i was hovering around mid 10's, then high 9's, and now been bouncing around a high 7 to mid 8's. but my fatigue seems to feel worse than the RBC's indicate and the bone pain or fatigue pain is worse too. Being tired is not so bad it's the weakness in my whole body, particularly my legs that really bother me because theres an overwhelming feeling to need to sit or lay down. Also, theres been some heart palpatations or arrythmias going on that really kicks my butt. All this has been discussed with my doctors and his prognosis is that my condition is spiraling fast and that i need to have a BMT. This was a huge surprise to me and to be honest it felt good that somebody said something unexpected and compassionate. For once I didnt feel like i was a fraud trying to convince drs. that what i was really feeling was legit. Finally, this hemotologist took the time to study my labs and diagnosed me as having the more severe type of alpha thal H disease known as the Constant Spring variant. However, he expected my iron would be in the 1,000's but to his and my surprise it was 225. He believes that my history of bleeding ulcerative cholitis and dark urine is the culprit for excreating my ferritin levels. So depite all that, i saw a transplant doctor and his opinion is that transplanting at my age(31) is too risky and advises against it. However, he wants to see me in two weeks to go over hla typing with my two siblings to see if there is a good match. Blood typing is 1,500$ US each so 3,000$ in all, which, is very expensive if he's not even going to approve the procedure. I also told him that i have four cord bloods from each of my nephews in storage for this occasion but he said they were not viable for some reason i didnt understand. i thought cord blood was the best option and every article i found on-line states the same. My question is should i go through the blood typing and hope a good match will change his mind? And has anybody known of anyone who used cord blood at my age and was it successful? I know the risks of GVHD and the chemo and all the other good stuff, but to be honest, the past 12 years of my life is a repetitive hell with no quality of life, and getting worse. Should i fight for this transplant and even see another doctor if this one wont budge? This disease is cruel in that i dont really fit the criteria of thal major yet serious enough that im having hemolytic crisis's every so often which required blood transfusions. I would really appreciate it if you had any imput and help me decide my fate.. Thanks Ryan H. ]]> Thalassemia Intermedia chynz http://www.thalforum.ca/forums/thalassemia-intermedia/1956-need-your-advice-please.html Gene Therapy Advance In Beta-Thalassemia http://www.thalforum.ca/forums/articles-news-talk/1955-gene-therapy-advance-beta-thalassemia.html Wed, 21 Jul 2010 16:56:45 GMT ---Quote--- Gene therapy’s roller coaster ride of euphoria and setback is on the upside. A new viral vector treatment for the anemia called beta-thalassemia works in vitro, and shows no sign of toxicity, according to a paper published in EMBO Molecular Medicine. The results “will pave the way...
Quote:
Gene therapy’s roller coaster ride of euphoria and setback is on the upside. A new viral vector treatment for the anemia called beta-thalassemia works in vitro, and shows no sign of toxicity, according to a paper published in EMBO Molecular Medicine.

The results “will pave the way forward” to clinically apply the treatment with the vector, called GLOBE LV, the researchers stated in the paper.

The team of Italian scientists used the therapy on human hematopoietic stem cells unable to produce beta-globin, the cause of beta-thalassemia.The disease interferes with hemoglobin production, and can be fatal if the patient doesn’t receive treatment. The viral vector, produced from HIV-1, contains genetic material correcting the defect. Once these treated stem cells developed into red blood cells, they were found to contain sufficient hemoglobin.

While other attempts at gene therapy for the disease have been previously made, the researchers say the results didn’t have enough efficiency to succeed

Thalassimia comes in two main types, alpha- and -beta varieties. It causes the production of abnormal hemoglobin, which not only reduces oxygen-carrying capacity, but can cause damage to internal organs.

Thalassemia is prevalent in people of Mediterranean origin, and some other populations. It’s a big problem in Oman.

Gene therapy has followed the traditional path of biotech treatments: enthusiasm to excess in the beginning, disillusionment and despair after setbacks, and renewed interest as incremental progress adds up. For example, an improved version of the gene therapy treatment for “bubble-boy syndrome” is now being tested. A few years ago, treatment for the disease was halted after some of those treated developed leukemia. The improved version is thought to have removed the leukemia-causing effect.

Here’s a blog post of mine from early 2009 discussing the revival of interest in gene therapy.
Source : Gene Therapy Advance In Beta-Thalassemia NCTimes.com Blogs ]]> solankyno1 http://www.thalforum.ca/forums/articles-news-talk/1955-gene-therapy-advance-beta-thalassemia.html Thalassemia major boy saved after stem cell transplant http://www.thalforum.ca/forums/articles-news-talk/1954-thalassemia-major-boy-saved-after-stem-cell-transplant.html Wed, 21 Jul 2010 16:50:23 GMT
Quote:
Ahmedabad: A five-year-old thalassemia major boy got a new lease of life following a successful stem cell transplant and would never require any blood transfusion in his life, doctors who treated him said here today.

"Kavya, son of Mahesh Vaghela who works with the Ahmedabad Municipal Corporation (AMC), under went a stem cell transplant last month. His condition is fine now as the donor cells have been accepted by the body," Dr Uday Deotare of Sterling hospital, who led the team of doctors who operated on Kayva told reporters.



"The stem cell were extracted from bone marrow of Kavya's elder brother Mihir (7)," he said.

Giving a brief medical history of Kavya, Deotare said that Kavya was detected with thalassemia major when he was six months old.

"Since then he has been undergoing blood transfusion every month till he was four and half year old. His parents had approached us some time ago for the operation which is very costly," he said.

"Now that the operation is successful, Kavya would not need blood transfusion for the rest of his life. However, he would be on medication for next one year," Deotare said.

Kavya's father Manish said that he was very happy that his son was cured and would never need blood transfusion. "I am thankful to the doctors who save my boy," he added.
Source : Thalassemia major boy saved after stem cell transplant ]]> solankyno1 http://www.thalforum.ca/forums/articles-news-talk/1954-thalassemia-major-boy-saved-after-stem-cell-transplant.html Questions, need answeres!?! http://www.thalforum.ca/forums/guest-corner/1953-questions-need-answeres.html Tue, 20 Jul 2010 07:02:56 GMT Hello this is my first time posting and im happy to find that even if im not registered i can still post, which is smart of use to do, I am 15 Im of mediteranian descendent and i was diagnosed with Thalassemia Minor about 3 or 4 years ago. As long as i can remember i have been quite the anxious... Hello this is my first time posting and im happy to find that even if im not registered i can still post, which is smart of use to do, I am 15 Im of mediteranian descendent and i was diagnosed with Thalassemia Minor about 3 or 4 years ago. As long as i can remember i have been quite the anxious child, At the moment im holding myself together, I get quite depressed at times and i dont wanna talk to anyone cause i dont want to worry my parents, I'd like you all to take me serious as im not an immature kid, Anyways to business.

I was wondering if there was a link with Thalassemia and Mood Disorders (Aggression, Depression, Anxiety Attacks Mainly), and if so does anyone know how? I honestly have nothing to be depressed about apart from my future career which i still need to choose as i am in year 10, Im always worried about everything honestly. I am quite skinny but i eat a fair amount of food, My feet are always cold but i am told to be the warmest person in my family, my mum cannot sleep without a hot water bottle to warm her feet in winter as she also has Thallassemia Minor, I have a temper as alot of things seem to stress me out quite easily, but never angry for no reason. I have trouble filling my lungs with oxygen as i need to breathe deep, im not the most active person as i get really tierd even just walking around a shopping mall when i was young would exhaust me as i have just remembered, My heart does race for no reason like when im stretching and i get heart palputations often. Also when i stand up just normally some times my eyes seem to go black and i start feeling weird and it takes a while for it to settle back to normal, so to speed that up i throw my head forwards and down and my sight seems to come back, my siblings also get this but i dunno if they have thalassemia.

So just is theyre any relationship with all this and Thallassemia, and especially aggression and so on, i have found several articles of tests in Iran but nothing helped.

I am looking forward to your answeres, and if i remember anything else i have left out, i will post it.

P.S. A special thank you to "Marientina" for all her help with everyone. ]]> Guest Corner Shards http://www.thalforum.ca/forums/guest-corner/1953-questions-need-answeres.html Transfusion Centres in Vietnam, Phillippines and the South East Asia http://www.thalforum.ca/forums/thalassemia-major/1952-transfusion-centres-vietnam-phillippines-south-east-asia.html Tue, 20 Jul 2010 05:51:45 GMT Hello everyone,

Its been a long time since I posted here and for those who don't know me, well, my name is Akhil Gupta and Im a Thal Major from Pune, India.

I would really appreciate it if anyone of you could please share any info on BT centres in Vietnam, Phillippines, Cambodia and the rest of the South East Asian countries.

Warm regards ]]> Thalassemia Major aki:) http://www.thalforum.ca/forums/thalassemia-major/1952-transfusion-centres-vietnam-phillippines-south-east-asia.html Artificial blood developed http://www.thalforum.ca/forums/thalassemia-major/1949-artificial-blood-developed.html Tue, 13 Jul 2010 20:02:53 GMT Artificial blood developed for the battlefield (http://www.physorg.com/news198221258.html) *(PhysOrg.com) -- US scientists working for the experimental arm of the Pentagon have developed artificial blood for use in transfusions for wounded soldiers in battlefields. The blood cells are said to be... Artificial blood developed for the battlefield

(PhysOrg.com) -- US scientists working for the experimental arm of the Pentagon have developed artificial blood for use in transfusions for wounded soldiers in battlefields. The blood cells are said to be functionally indistinguishable from normal blood cells and could end forever the problem of blood donor shortages in war zones and difficulties in transporting blood to remote and inaccessible areas.

The blood is made from hematopoietic stem cells from discarded human umbilical cords, which are turned into large quantities of red blood cells by a method called "blood pharming" that mimics the functions of bone marrow. Pharming is a method of using genetically engineered plants or animals to create medically useful substances in large quantities. Using this process the cells from one umbilical cord can produce about 20 units of blood, which is enough for over three transfusions for injured soldiers in the field. ]]> Thalassemia Major Neel_R http://www.thalforum.ca/forums/thalassemia-major/1949-artificial-blood-developed.html Anemia, doctor says it could be thalassemia. http://www.thalforum.ca/forums/guest-corner/1948-anemia-doctor-says-could-thalassemia.html Wed, 07 Jul 2010 22:17:52 GMT I've been lurking here this morning. I have a couple of questions.

At my routine physical recently my blood tests were showing anemia. After supplementing iron and then doubling the iron and drinking orange juice with it without a marked improvement I have been given a referral to a specialist. How did you guys find out that you had thalassemia? I've had three CBCs since my physical. All are still below the minimum acceptable levels and other parts of it are off (Monocytes I believe and I can't remember the others). On my CBCs my hemocrit was well below the acceptable 35% for women and my RDW is about twice the highest acceptable limit. What did your CBCs look like when you were diagnosed?

I saw another post on the site where a woman was talking about having perpetually cold extremities. Is this common to thalassemia? What other indications did you have? Mostly I have times where I feel like I'm going to pass out. I have an infant son and there are times when I am trying to pick up his carrier to get him out of the truck and my vision starts to get blurry as though I'm about to pass out and have to just lean against the truck until it passes. I also get nausea sometimes as though I'm going to pass out.

Thanks for your time and any information you can share will be greatly appreciated. ]]> Guest Corner Unregistered http://www.thalforum.ca/forums/guest-corner/1948-anemia-doctor-says-could-thalassemia.html