Recent Posts

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Working Towards a Cure / Re: US FDA Approves ZYNTEGLO® (betibeglogene autotemcel)
« Last post by VB on September 25, 2022, 10:11:50 PM »
Is ZYNTEGLO really able to help Thal Majors keep their Hb in normal or near-normal ranges ? Is there anyone on this group who has tried this drug ? Yes, the cost is too expensive. About 2-3Million dollars.
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The Spotlight / Re: Introduction, new thal minor member
« Last post by VB on September 25, 2022, 10:07:41 PM »
hi Anita,

Good to hear from you.
It is great to know that your grandma who is turning 90 seems to be doing well, even with thal minor. Have you confirmed that status by doing her blood work ? Certainly nap in the afternoon surely would help any thal minor. It helps me too, and we are around age 40.

The other thing is the overall nutrition. Thal minor need to take better care of their nutrition compared to non-thal population. Andy has a post about nutrition/supplements for thal minors.

Regards.
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The Spotlight / Introduction, new thal minor member
« Last post by ahalasz1 on September 23, 2022, 03:05:21 PM »
Dear all,
I was aneamic since early childhood, I was a regular at the local haematology department, and I was treated with iron supplementation until the age of 20, when by chance I met a haematologist who diagnosed me as a beta thalassemia minor, a trait not at all common where I grew up. It runs in my family (mother, maternal grandmother, brother, daughter, niece all affected). My HgB is usually around 10, sometimes down to 9 in more difficult (stressful) times. Not sure if I have intermedia, I do definitely have symptoms of anemia.
On the upside: my affected grandma is soon turning 90, and she is super active and fit and strong - the only sign of the anemia she ever had was that she tended to sleep and nap more than usual.
I've been reading this forum with great interest since quite some time, and I am grateful for the advice and inputs I have read here. Looking forward to discussions here.
All the best to all of you!
Anita
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Announcements / Re: My absence
« Last post by VB on September 20, 2022, 06:31:54 PM »
I am really sorry to hear about this Andy. This can be a very difficult time for the family. I will pray for your family.

Have you looked at : https://www.chrisbeatcancer.com  ? There are several testimonies on this website.

Please stay strong and positive.
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Thalassemia Minor / Is lots of manual labor detrimental?
« Last post by WayfinderAli on September 19, 2022, 01:16:10 PM »
Hi! I’m a 36 year old female, hoping to have kids in the next couple of years. I’ve been struggling more and more lately with exhaustion, pain, and migraines. I discovered I had a gluten and histamine intolerance and cut out gluten and high histamine foods. 6 months later my skin is clear, but I’m still just as tired and hurting. I eat SUPER clean. No gluten, no seed oils, local grass fed meats, lots of fruits and  veggies.

I had a huge blood panel done a month ago. Literally nothing was abnormal except the blood smear. No issues with thyroid, inflammation, nothing. My doc said ‘you probably have thalassemia minor based on your blood smear, but it shouldn’t cause your symptoms’

After researching minor, lots of things make sense. I’ve always been horrible at running the mile, but great at sprints and things that require strength- like pull-ups. I’ve been extremely active my whole life, and just thought I was being a baby when it came to pushing through the pain of aerobic efforts. My best mile time was pretty terrible at 9 minutes, but at one point I could do 20 pull-ups, a lot for a woman.

I was an outdoor adventure guide for the last decade and took a job a year ago doing work as an arborist. Things have gone downhill fast. I’m wondering if the 8 hours of hard physical work is just too much for my body to keep up
With? Am I hurting myself or my bones by working hard every day? I just started taking folate and vitamin E at the suggestion of this forum, and have also been taking D, magnesium and zinc.

Relevant blood panel info:
Iron panel showed no deficiency
MCV: 76
MCH: 23.8
RDW: 15.7
Hemoglobin: 12.3
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Living with Thalassemia / College Education and roadblock - Thalassemia as a disability
« Last post by Narendra on September 08, 2022, 01:29:05 PM »
Hello All - I would like to know if anyone in India has information regarding Thalassemia being part of disability and the college not accepting application due to Thalassemia being a disability.  This is for education for Physical Therapy in the state of Gujarat (Government college).

Has anyone ran into such issues?
If so, what was done about it?
Instead of being a roadblock, I was hoping this treat thalassemia patients equally.
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Announcements / My absence
« Last post by Andy Battaglia on September 03, 2022, 08:13:38 PM »
I apologize for being absent for so long, but life has become more difficult. My wife has metastatic breast cancer that has spread to her bone and is in intensive treatment with both chemo and radiation. I have very little time and am quite often emotionally exhausted.
I will continue to keep the site open, but my presence will be infrequent.
Thank you for your understanding.
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The price tag is enormous. Do you know anything about if insurance companies will help cover the cost?
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L-methylfolate is preferred over folic acid, as it is processed better by the liver. It can be very effective. I take it daily to combat fatigue from my bad thyroid and it works well. It also keeps my Hb quite high. Only natural vitamin E should be used. it will be marked D-alpha tocopherol, not Dl-tocopherol. Dl is the synthetic form and is made from industrial waste products.
Keep giving your child good wholesome foods that are nutritious.
Her status is most likely intermedia.
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Working Towards a Cure / Re: Luspatercept (Reblozyl) side effects - DVT & Stroke
« Last post by Andy Battaglia on September 03, 2022, 08:04:57 PM »
Thanks for the update. The drug definitely does not suit everyone.
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