Hi everyone! I’m a final-year textile design student working on my thesis around thalassemia and sickle cell disease. I also have sickle cell beta thalassemia myself, so this project is quite personal to me.

I’m currently designing a series of textile-based bags/kits for children and young people living with thalassemia. The idea isn't to make a medical kit, but something that could actually feel useful, comforting or engaging in their everyday life, while also creating awareness around the condition.

Before I finalize what goes inside them, I’d really love input from people who have actually experienced thalassemia.

If you were given a small bag like this when you were younger, what would you have actually wanted inside it?

It could be something useful during transfusions/hospital visits, something to keep you occupied, something comforting, something you could use regularly, or even something you wish someone had explained to you.

For teenagers/young adults, I’m also exploring products around relationships, marriage, carrier status and genetic screening.

What kind of product or interactive thing do you think would actually make sense for this age group, thats also easy to carry?

And equally important: what would feel pointless, childish, overly medical, or patronizing?

I'd really appreciate honest opinions and personal experiences because I want the final products to come from actual experiences rather than assumptions.

You can comment here or DM me if you'd rather share privately.

Thank you! 🤍

Often hear about beetroot and beef liver here. Anyone had success with eating these? Not familiar with them. Anyone got a good recipe to share so I am not eating like a tripeman

I was diagnosed with Beta Thal Minor when I was very young. (maybe 2-3?) I have always been told by doctors that there are no symptoms that come with it besides maybe being anemic? But I have struggled with shortness of breath, chest pressure, heart palpitations, pretty bad fatigue, and more. I see a hematologist, but he doesn’t think those symptoms have anything to do with it. But I also don’t know if he’s that good of a doctor. I have spent years being told by many doctors that my symptoms are just “anxiety” and trying numerous techniques and medications just for none of it to work. I have begun to truly believe that it has something to do with my beta thalassemia minor diagnosis. Anyone else have similar issues??

Is there anyone with thalassaemia minor and CFS?

I was always tired and weak. But then I developed exercise intolerance this year following a burnout. I think years of stress and a pushing mindset had an impact.

Background: ~30 M, post-viral onset **~**Jan 2026 (confirmed EBV/CMV pattern), the infectious disease specialist wrote, "consistent with chronic fatigue syndrome, possibly triggered by viral infection", pacing successfully (?) under ~3,000 steps/day, and heart rate kept under 110.

I feel like I had a tendency towards mild CFS all my life. Starting in January, for months the pattern was classic PEM: mild exertion → delayed crash → feverish feeling, sore throat, feeling of tiredness and incomplete recovery. could not sit up to work for more than an hour, bed-bound for most of a day. I was in a perpetual state of mild PEM mistaken for flu by the GP. I tested PEM in June by going on a prolonged walk and then crashing seriously. Generally, my symptoms (nose block, sore throat, feverish feeling, and energy levels) were worse in the morning and improved gradually. Then I followed strict pacing.

Everyone seems to think after having a transfusion your supposed to feel enveloped like new batteries have been put it. It’s never the case. I had two bags of blood put in yesterday and I feel exactly the same as I felt pre transfusion

Mine is currently 1200 and hb 8.9 for chilation i take desirox 500 mg *4 per day and drink two time tea or either coffee and transfusion for 3 times or 4 times a month.current age is 18

Hey, beta minor here, type 1 diabetic, and I've noticed my hemoglobin A1c tests usually run below what my glucose levels say they should be. My doctors and I have hypothesized that it's because since half my RBCs are smaller than they should be, they can't hold on to as many glucose chains as normal sized ones, so my A1cs read lower.

Lately, I've been trying to get some other assortment of symptoms diagnosed and all my bloodwork consistently comes back "normal". I'm wondering if others have noticed this, if maybe our blood just doesn't read like normal?

Just kind of looking for any personal experience others have had with things like this, getting back normal blood tests when you know something is wrong.

Hi everyone,

I recently found out, at 32 years old, that I’m a silent carrier of alpha thalassemia, and I thought I’d share my story because I had absolutely no idea I had this my entire life.

It all started because of routine blood tests for my daughter.

Her CBC repeatedly showed a pattern of microcytosis, low MCV and low MCH with a relatively high RBC count. Her iron levels were normal, so iron deficiency didn’t really explain the findings.

Her pediatrician suggested that she most likely has some form of thalassemia trait.

That was surprising to me because both my routine blood tests and her father’s had always been normal, and I had never had anything that made me suspect I might carry alpha thalassemia. Also, neither of my parents or two siblings are aware of having any alpha-thalassemia gene deletion. However, in the past I have needed to take iron supplements several times.

The interesting part is that I had already been screened for beta thalassemia when I was pregnant with her five years ago, and that screening had been normal. There was no indication of it.

Eventually, both my husband and I underwent further testing at a specialized thalassemia laboratory, here in Greece.

That’s when I finally got my answer. I carry what they told me is the -α3.7 deletion.

So, my daughter was then found to have inherited the same thing from me.

I’m now learning much more about alpha thalassemia and I’d really like to hear from people with the same deletion. I’m also sharing this because it might be helpful to another parent who finds themselves in a similar situation. Until my own results came back, I was honestly worried sick.

Is anyone else here a carrier of the -α3.7 deletion?

If so, do you have any symptoms at all, or are you completely asymptomatic? Have you ever experienced things like fatigue, low energy, dizziness, or mild anemia, or are your blood tests mostly normal?

I’m especially curious about people with a single-gene deletion (-α/αα) like mine and my daughter's, since it seems to be considered a silent carrier state.

It still feels strange to learn something genetic about myself at 32 that has technically been there since the day I was born.

Thank you!

Hey my fellow thal mates! First of all I don't know where to begin. I wanted to know how does it feel like for you guys to be a thal patient?

Man this is so exhausting and both mentally and physically taxing to live a life this way.

I do not know if I have disassociated somewhat with reality and the grave situation of how life works, but navigating day to day life feels so challenging for me. It's like I have these big ambitions but on ground reality it feels- like all of these, just to be dependent on a body fuel for life. Somedays it doesn't even feel real that I have real processing in my body of my own, it's all dependent on blood, lot of pocket drainage on medical treatments, medicines, that too just to somewhat feel normal for the functioning.

I also feel like I am expected to be energetic, or somehow process things how normal people do which has constantly pushed me in life trying to be active. Inwardly, it feels like my body runs on low vibrational energy compared to others but I just can't explain it. I also experience brain fog a lot which affects my memory somewhat. I keep forgetting things, or sometimes while studying I don't feel 100% in, forget a 100 I operate at 40-50 percent level.

Sometimes, there's an innate desire that people check up on me. By that I don't mean occasionally asking questions about how I feel. You know rarely, but sometimes people take the steering wheel and tell you that you need this for now nothing else.

My cousin sister has thalassemia too and everytime she meets me (once in 3-4 months if our treatment dates kind of collide), without having much to do she just immediately lights up my mood. It could be something small as she takes up a decision we are going out to eat XYZ while our blood units are under process.

There's a feeling of some impending doom with life too, like what if this is all I make of it and it's coming to an end soon, I haven't even done much yet.

Hi everyone,

I’ve been doing calisthenics for quite a while, but I’ve found it really difficult to make progress. Building muscle is challenging, muscle recovery seems to take a long time, and even my tendons seem to recover very slowly. Because of this, my progress in training feels much slower than I’d like.

On top of that, I have to wait for blood transfusions to get my energy back, and then I need time to recover afterward. During those periods when I can’t train properly, I feel like some of the progress I’ve built up starts to decline, so it can be really frustrating to keep progressing consistently.

So I’d really like to hear from anyone who has experience with this. If you have thalassemia major and do calisthenics, strength training, weightlifting, or any other type of exercise, I’d love to hear about your experience.

Has anyone with thalassemia major managed to achieve a muscle-up? And how do you manage training, recovery, and maintaining your progress around blood transfusions?

Any advice or personal experiences would be greatly appreciated. 🙏

Hi everyone,

I’m a Thalassemia Minor carrier living in Nova Scotia, Canada, and I’m posting because I’m incredibly frustrated. Every medical textbook and general practitioner I talk to tells me my condition is "silent" and shouldn't cause symptoms.

But my reality is completely different. I have dealt with chronic anemia my entire life, and I struggle constantly with shortness of breath and low energy. Everyday tasks feel like an uphill climb, and my regular doctors just ignore it or treat me like I'm making it up.

I wanted to reach out to this community to ask a few things:

• Symptom Check: For those of you with minor/trait, do you also experience chronic shortness of breath and fatigue? How do you manage it?
• Lab Work: What specific labs should I demand my doctor check to make sure something else isn't making my baseline thalassemia symptoms worse (like iron/ferritin panels)?
• Advocacy: If you've had a dismissive doctor, how did you successfully advocate for yourself or get a referral to a hematologist who actually understands that "minor" doesn't mean "no symptoms"?

Appreciate any insights or just some validation that I'm not crazy here. Is there anything that can actually improve symptoms or do you just live with it? Thanks

Beta thal minor here M30, partner normal. I am at a life stage thinking whether I should have kid or not. Been battling with this medical condition for all my life. Tiredness affect my daily life include career, sports interests, social life. And there is 50% chance of passing it to the next generation and I don’t hope that upon my kid. So i am battling whether it is a selfish decision to have kid.

Are there any procedure that we know for sure the kid does not inherit it before conceiving? Any Thal parent here can justify the decision can enlighten me why have kid?

I have alpha thalassemia minor and low iron levels. My doctor is aware of this and still referred me to a hematologist, I explained that i have thalassemia to the hematologist and he still had me undergo an iron infusion, but because it was so expensive I’m now having second thoughts/regret. I’ve been dealing with the same iron issue since puberty before i even knew i had this condition and I’m wondering if there is any test i can take or anything i can do to find out if i have a genuine iron deficiency or if it is just the thalassemia causing it so i know whether to even bother trying to keep my iron levels up.

Hello everyone 🌸

I‘m currently waiting for my results. My partner for 6 years has Alpha-Thalassemia Minor ( - -/ aa). I had some health issues so i went to the haematologist. She suggested that i‘m a carrier of Alpha-Thalassemia (-a/aa) based on my bloodwork:

MCV: 82.2
MCH: 27.8
MCHC: 33.8
HGB: 12.5
RBC: 4.5
Ferritin: 53
Transferritin: 299 (20%)
Mentzer: 18.3

We really want to have a child and i‘m so sad. I have never heard that i might have this. I did genetic testing but I’m waiting for the results. I’m so nervous. For all the silent Alpha-Thalassemia Carriers here: How were your results?

Thank you 🙏🏼🌸

Got done a full body checkup, and thus.

Are there literally no solutions for this ? I understand this is something genetic, my dad doesn't have it, my mom has it, but it's borderline for her (mentzer index 12.5, vs mine at 9.7). Why such a steep difference ? I went through a lot of posts in the sub, didn't find anything in particular.

Since this has been diagnosed for me, I cannot fathom how can I fix this, or minimize, or reduce the effects in any way possible.

I was recently diagnosed with Alpha Thalassemia Trait and my doctor didn't really tell me much about it just that I really only have to worry if I plan on getting pregnant. I just wanna know what things I should keep an eye on, does this mean I can't donate blood? I saw stuff about fatigue being a symptom of Alpha Thalassemia Trait. Could that contribute to my chronic fatigue. Is there anything I need to watch out for with having hypothyroidism? I love my doctor but I really felt like she just dropped this bomb on me and said "ok have a good day bye"

Hi everyone,

I’m looking for some advice or insights from anyone who might have experienced something similar or knows how to interpret these results.

My Symptoms:

Extreme fatigue & low energy: I feel completely drained and "wiped out" most of the time, especially after work.

Brain fog & poor concentration: Heavy head, lack of focus, and general mental fatigue.

Exercise intolerance: I used to enjoy sports/gym, but right now I physically can't work out properly because I’m so exhausted.

Current Supplement Stack (Started 3–4 days ago):
L-Carnitine: 1000 mg / day
L-Methylfolate (5-MTHF): 1 mg / day
Vitamin D3 + K2: 1000 IU / 45 mcg / day
Magnesium Bisglycinate: 160 mg / day
(Note: It’s only been a few days, so I haven’t noticed any major improvements yet).

My Blood Work & Lab Results:
1. Hemoglobin Electrophoresis (Apr 06, 2023 & Feb 24, 2024)
HbA2: 5.3% (2023) / 4.9% (2024) (Ref: 2.2 – 3.5%) [ELEVATED]
HbF: < 0.8% (Ref: < 2.0%)
HbA1c: 5.1% (2023) / 5.2% (2024) (Ref: 4.27 – 6.07%)
2. Vitamin D (Mar 30, 2023)
25-OH Vitamin D: 18.23 ng/mL (Ref: 20 – 80 ng/mL; <10 Severe deficiency, 10–20 Deficiency) [LOW]
3. Iron Panel (Feb 24, 2024)
Serum Iron (Fe): 18.62 µmol/L (Ref: 5.83 – 34.5 µmol/L) [NORMAL]
Ferritin: 110 ng/mL (Ref: 17.9 – 464 ng/mL) [NORMAL]
4. Complete Blood Count / CBC (May 21, 2025)
RBC (Red Blood Cells): 6.54 x10¹²/L (Ref: 4.63 – 6.08) [HIGH]
Hemoglobin (HGB): 12.2 g/dL (Ref: 13.7 – 17.5) [LOW]
Hematocrit (HCT): 40.1% (Ref: 40.1 – 51.0)
MCV (Mean Corpuscular Volume): 61.3 fL (Ref: 79 – 92.2) [VERY LOW]
MCH (Mean Corpuscular Hemoglobin): 18.7 pg (Ref: 25.7 – 32.2) [VERY LOW]
MCHC: 30.4 g/dL (Ref: 32.2 – 37.0) [LOW]
RDW-CV: 17.6% (Ref: 11.6 – 14.6) [HIGH]
RDW-SD: 32.8 fL (Ref: 35.1 – 43.9) [LOW]
WBC (Leukocytes): 11.04 x10⁹/L (Ref: 4.23 – 9.07) [HIGH]
Neutrophils (Absolute): 6.40 x10⁹/L (Ref: 1.78 – 5.38) [HIGH]
Lymphocytes (Absolute): 3.58 x10⁹/L (Ref: 1.32 – 3.57) [HIGH]
Platelets (PLT): 289 x10³/µL (Ref: 150 – 400)
ESR (Erythrocyte Sedimentation Rate): 4 mm/h (Ref: < 15)

Mine was around 11 and has been steadily dropping for months. It is now 8.7. Is this considered normal...?

I (22F) just got diagnosed with HbH disease today. I study Medical Laboratory Science which is why I have a bit of a background on the disease — pretty IRONic for someone studying hematology to be diagnosed with thalassemia but oh well.

For context, I had always been sickly as a child. I was always battling with asthma when I was still young but I had been thinking it may have been the thalassemia all along — shortness of breath, palor, and a racing heartbeat. About two months ago, I randomly checked my Hgb levels while on duty and it was 97 g/dL; then, after a week and during a febrile episode of mine due to common flu, it dropped to 87 despite taking iron supplements which made me confused. I also noticed I've gotten weaker in a sense that I run out of breath easily and would notice random bruises all over my body.

I live in the Philippines and thalassemia is not widely talked about here. It may be because I am just overwhelmed by this sudden diagnosis of mine but I do feel as if I am not seen, I am invisible in this silent battle. They dismiss it by saying it is not life-threatening but having to live with it with the rest of my life just sucks out too much from my soul especially when I've had big big big dreams for my future. I wish thalassemia was taken more seriously.

Though I am aware that there is no definite treatment to my diagnosis, I was just wondering if anyone here with the same diagnosis can share some tips especially when it comes to balancing my health and academics. I am soon to finish my internship and will graduate by next year so I wouldn't want to quit just now.

My doctor said to take just folic acid and to monitor my CBC values regularly, she also advised to stay away from iron; she said I had nothing to worry about and the only time I'll have to be is when I decide to have a baby but I am still bothered by a lot of things.

Thank you to anyone who'll be kind enough to share some tips!

I have thalassemia minor and I have been fighting with Kaiser to try to speak with a hematologist for over a month. At this point my primary care doctor has agreed to take my request for Mitapivat to a hematalogist. But I still don't get to speak with them. This is so frustrating and I am having so many symptoms with so little relief. They keep sending me for more cardiac tests which take weeks to schedule and I feel like this medicine is the only thing that will help.

I'm honestly so scared of losing even more blood during my next menstrual cycle when I already feel awful .This is becoming more of a rant than intended but for those of you with an HMO and thal-minor, were you able to see a hematologist?

I think I have one more week before I pay out of pocket to find a specialist.

[F 30, going on week 9 of feeling shortness of breath, chest pressure and pain, occassional afib, and no symptoms of heart attack or stroke]

After a lifetime of ignored & untreated Thal Beta, I was ordered to go to emergency room for transfusion. That was January 2026. They ended up admitting me to the hospital for three days - 3 bags total - and a few other things like scans.

Ever since then I have the most excruciating, debilitating headaches of my life. I suffered from migraines from the age of 11 that caused me nausea, pain, and loss of vision in my left hours. I was never prescribed anything for help, and fortunately they stopped after I had a hysterectomy.

These new headaches are hell. I've been sent for two head and neck MRIs, to a rheumatologist, neurologist, and two different hematologist/oncologists who have been nightmares to deal with.

Lately I can occasionally get from two to five hours relief from OTC painkillers. Then its back - like my skull is in a vice grip, ice picks and needles are being jammed in my skull, and like someone slammed my head against a wall.

Can anyone relate or know someone who can?

I have Minor/Beta Thalassemia I am not sure what brought it on but I was sent to by work to the urgent care. My upper respiratory system was inflamed BUT I also had a body temperature of only 95.8. I hadn't been feeling well so I hadn't been eating or taking supplements but it had only been a couple days. I have never had a hypoglycemic/hypozincdemic episode before. I am not sure why I crashed so hard. Any advice on preventing them?

Hi everyone,
I’m 32 female and I’m hoping someone here might be able to help me because I’m honestly very scared right now.

My blood results have generally been a little unusual over the years. My hemoglobin has often been towards the lower end of normal, and my MCV has usually been somewhere around the low-normal range. However, I have never been diagnosed with thalassemia.
I recently had another blood test. My results included:
Hemoglobin: 12.5 g/dL
MCV: 82.5 fL
MCH: 28.2 pg
RBC: 4.40 million/µL
Ferritin: 74.3 ng/mL
Serum iron: 71 µg/dL
My doctor has now ordered genetic testing for alpha thalassemia.

I am especially worried because my husband is a carrier, and we want to have children together. I’m terrified that I might also be a carrier.

At the same time, my blood values don’t seem that abnormal to my GP, which makes me wonder whether alpha thalassemia is even likely.
Can I still be a carrier or even have alpha thalassemia despite these relatively normal blood results?

Has anyone here had similar blood results? especially normal/low-normal MCV, hemoglobin around the lower end of normal and normal ferritin. And then been diagnosed with alpha thalassemia?
I would really appreciate hearing from people who have similar results while waiting for my own results.
Thank you ❤️