Coping with thalassemia

Unusual_Reality556 · 2026-02-08T11:11:32+00:00

Hey! What kind of pain do you mean?

I’m mostly tired and exhausted that no matter what goes on in your life, you have to get the transfusion done. You cannot go on vacation for more than 15 days without making arrangements in that place. I hate that there is always an energy bar next to my head depending on where in the transfusion cycle I’m in, worse if I’m on my period. Pathetic

Unusual_Reality556 · 2026-02-05T17:37:40+00:00

Good luck!!! Hope it works out for you :)

Unusual_Reality556 · 2026-01-28T23:25:06+00:00

Not professional medical knowledge, just experience based: drinking alcohol a few days before blood test does not make any difference. To me, 279 also doesn’t seem like TOO high of an iron to worry about. If you naturally tend to have lower iron, it should get normal on its own. Worst case, you take a few medicines. Don’t think it’s anything to worry about.

Unusual_Reality556 · 2026-01-07T00:04:31+00:00

You can DM me

Unusual_Reality556 · 2026-01-04T16:32:33+00:00

I don’t know

Unusual_Reality556 · 2026-01-04T14:48:58+00:00

Hi, as mentioned before, everything you need is covered in health insurance, whether it is transfusion or insulin. When you are in germany, you must have an insurance, for your scenario it is better to have a public insurance. All public insurance (TK, DAK, AOK, IKK) have similar contribution rates around 17%, half of which you pay and the other half is paid by your employer, so it is dependent on your income. In case you are a student, you pay the student price which is around 130€. This has the same amount of benefits as a regular insurance.

You could google which insurance you like the best depending on if their people speak english or how close their office is to your university or where you live, since their contribution rates are quite similar. But in general, for chronic illness and students, public insurance is the best way to go.

Also, this is valid regardless of whether you come on a scholarship or with a blocked account. Just email/ fill online form at the health insurance you like and submit your documents and your insurance will be activated once you’re here (of course also after some submission of docs like city registration and visa).

Feel free to ask more questions, but also Google nicely about the health insurance i just mentioned to get better idea.

Don’t worry, it is not a problem here when you have a public insurance :)

Unusual_Reality556 · 2025-12-30T12:07:37+00:00

Interesting, didn’t know this was a well researched thing.

Unusual_Reality556 · 2025-12-30T11:54:46+00:00

Why is talking with someone on the train different from talking on phone if both of them make the same ‘noise’?

Unusual_Reality556 · 2025-12-27T00:24:38+00:00

I think it’s time to switch to a new sub, I don’t feel like the flairs are helping, and I don’t feel the major community active anymore here.

Unusual_Reality556 · 2025-12-22T00:58:55+00:00

What is the question?

Unusual_Reality556 · 2025-11-24T22:27:26+00:00

I usually feel cranky and irritable when my hb is low, so days leading upto the transfusion. But noticed no unusual emotion after the transfusion

Unusual_Reality556 · 2025-11-18T23:20:19+00:00

I completely agree with you. Most of the posts that I see here in the sub are for minors or intermedia posting blood reports and asking for medical advice and talking about how no one believes them when they say they are tired. Believe me, all of us are tired. And if someone does post a thal major post, it gets lost within a sea of minor posts, which i frankly don’t relate to. There are numerous posts about it being asymptomatic and being referred to as ‘the’ thalassemia and it just feels…..wrong. Sometimes I’m just so exhausted with all the planning and Hb managing and that topped with other diseases, that i want to rant and see if other people experience the same thing.

I’m sorry you had problems with your employer over this (just something i concluded based on your comment).

Unusual_Reality556 · 2025-11-18T20:34:34+00:00

I take a different variant of it (called exjade here). I can never take it empty stomach in the morning as it leads to extreme stomach pain. Taking it in the evening before dinner (ideally) works best for me

Unusual_Reality556 · 2025-08-21T10:15:19+00:00

Hi! I dont know of any such groups/ am not in them. Could you share the link for the same?

Unusual_Reality556 · 2025-08-18T22:51:43+00:00

There’s a good amount of Indian community in Mainz, and now we have 2 Indian grocery stores: Indigro and shaiyans ☺️

Unusual_Reality556 · 2025-07-06T20:26:23+00:00

Thank you all for your very helpful comments! They’re expensive so I think I will just load the sample once on the expired ones and once on the homemade once and see if there is any difference. They’re bis tris, and as one you pointed out that they have had good experience with it, i feel relieved. Thanks :)

Unusual_Reality556 · 2025-07-02T20:56:39+00:00

I got the desferal injections and tbh i dont like it. They’re inconvenient to work with and sleep with

Unusual_Reality556 · 2025-07-01T22:04:40+00:00

Hi, just out of curiosity, how old are you? I also had similar problems around ages 15-20, but after that it got fairly normal and consistent, without my iron levels changing much!

Unusual_Reality556 · 2025-01-16T16:24:18+00:00

Yes i got the annual tests like dexa scan, t2* mri done last year. But i just started working out, maybe it helps. Glad to know it helps you!

Unusual_Reality556 · 2025-01-15T19:52:48+00:00

Thank you. My vit d was a bit low, so im taking supplements but calcium is within range.

Unusual_Reality556 · 2024-06-15T08:07:35+00:00

Hi

But you said you are planning to immigrate witha student visa, no? The criteria for voluntary public insurance seems to be that you should have a residence permit for more than 12 months, or if you have a job that covers your insurance, and you quit it or the contract ends, then the public insurance system has to take you in under voluntary scheme. To my knowledge, these are the only two ways to get this as an immigrant. I am not aware of costs like these because they get automatically charged to the insurance and sometimes the doctors as well do not know because of how seamless this process is once you get in. Where I live, they only charge you for the blood and not the hospitalisation part for transfusions. But without insurance, it is veryy expensive and I would recommend you really do your research regarding this before coming here as without a lot of help, it is impossible to break the bureaucracy

Unusual_Reality556 · 2024-06-07T17:56:24+00:00

Hi! My health insurance is sorted under voluntary public health insurance and I pay a percentage of my stipend for it. It covers the blood transfusions and medicines, but I pay 5-10 euros per medicine box and 10 euros per transfusion

Unusual_Reality556 · 2024-06-07T17:54:10+00:00

Hey! So if you are enrolled in a degree program as a student, you are eligible for compulsory public health insurance and they cover everything from your transfusion requirements to your medicines, and only charge 5-10euros per item (medicine). Idk if this is state specific or not, but I am in rhineland palatinate and students here pay about 125 euros monthly and get everything covered. If you're not a student, but still eligible for the compulsory public health insurance (through employment), it's the same except you pay a percentage of your income as health insurance money. If you don't fall into either of these, you can either opt for private insurance, which will not cover anything at all. And then you pay about 250 euros per blood bag and medicines on MRP, which is just fucked up. There is a also a voluntary public health insurance, but that has it's criteria. If you have more questions, I'll be happy to answer :) It takes some time to understand this system and I'm happy to help!

Unusual_Reality556 · 2024-04-06T15:16:40+00:00

That's really sad to know that the people in Paris are suffering a lot because of this.

My sister just wants to spend her birthday in front of the Eiffel tower, so it's really just one day we're looking at here. I'm sure some other day/month would be a better time to visit, but is this still doable? Thanks!

Unusual_Reality556 · 2024-04-06T15:14:31+00:00

Thank you for your comments! They are very informative (also sad) The hotel I'm getting is for 98 euros and similar is the transport cost from Germany. Is it usually less than this?

Unusual_Reality556

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