Hereditary Spherocytosis and COVID-19 – My Experience
As I mentioned in the My story section, I have gone through COVID-19 at least twice — even though I was vaccinated with two doses.
The first time was sometime around 2022–2023. I most likely got infected at work. I entered a cardiovascular unit where I was fixing a broken computer. After a while, I noticed a handwritten sign on the door next to me that said “COVID-19”.
Up until that point, I had successfully avoided getting infected. But at that moment I thought to myself: “Well, if I get COVID in the next few days, at least I’ll know where it came from.”
About 3 days later, I started feeling tired and generally unwell. I kept going to work and didn’t pay much attention to it at first.
Then one day, even the smallest movement started to feel exhausting. I decided to get tested — and it came back positive.
Suddenly everything made sense.
I felt completely drained, like something had sucked the energy out of me.
I went home and went straight to bed.
That evening, my temperature rose to around 39°C (102°F).
The next 3 days looked like this:
- I was reducing fever with ibuprofen (which works well for me)
- I avoided paracetamol because it didn’t suit me in the past (and I’ve read it may not be ideal for people with anemia — though everyone should consult their doctor)
Other symptoms included:
- diarrhea
- severe headaches and body pain
- runny nose
- intense burning sensation in the eyes
The eye pain was probably the worst part. I couldn’t look at screens (phone or TV), wore sunglasses indoors, and tried to sleep as much as possible.
Around day 4–5, the fever went down and I started to feel slightly better.
However, the fatigue remained. For the following weeks, I needed a lot of sleep and rest (which is typical for me with any infection). Not easy when you have two small kids at home 🙂
Gradually, things improved — the runny nose faded, the cough was mild, nothing too serious.
Still, it took about a month and a half before I felt fully functional again.
During recovery, while watching Netflix, I noticed something strange — I couldn’t see parts of the subtitles.
It felt like something was blocking them.
Eventually, I realized I had developed eye floaters (small moving spots in vision) during the illness.
It’s not dangerous and many people have them, but it can be annoying.
Sometimes you even wave your hand thinking there’s a bug flying around… and there isn’t 😄
The second confirmed COVID-19 infection happened about two years later.
This time, the course was significantly milder:
- fever
- fatigue
- about a month at home
Overall, it felt more like a stronger flu.
What I’ve noticed over time:
Since having COVID-19, the way my body reacts to common viral infections has changed.
Before:
- sore throat
- runny nose
- gone within 1–2 weeks
Now:
- a stronger sore throat lasting up to 3 weeks
- sometimes no runny nose at all, unlike before
- then it just disappears
It feels like COVID somehow “reset” something in my body.
To summarize:
As a patient with hereditary spherocytosis, my COVID-19 course was worse than my wife’s (who is otherwise healthy), but not life-threatening.
My main observation is:
- my body reacts more slowly
- recovery takes longer
- I experienced significant fatigue during the illness
- I had joint pain throughout my body, especially in my knees and back
What helps me:
- healthy diet
- enough sleep
- rest
- light movement
And most importantly: a positive mindset.
PS:
Before I got COVID-19 myself, I tried searching online for “hereditary spherocytosis and COVID-19 experience”, but couldn’t find much.
That’s one of the reasons why I decided to write this article.
Hopefully, it helps someone — even though, of course, the best option is to avoid getting sick altogether 🙂 (which, in my case, doesn’t always work).
Frequently asked questions
Is COVID-19 worse for people with hereditary spherocytosis?
Not necessarily significantly worse, but it can be more demanding. In my case, recovery took longer and fatigue was more intense. The course can vary from person to person.
How long does recovery take with spherocytosis?
For me, it took about 6 weeks to feel fully normal again. Fatigue was the longest-lasting symptom.
Can COVID-19 change how your body reacts to other infections?
In my experience, yes. Since COVID-19, my common viral infections feel different — for example, longer-lasting sore throat without typical symptoms like a runny nose.
What medication is suitable for COVID-19 with spherocytosis?
I personally use ibuprofen, which works well for me. Paracetamol didn’t suit me, but everyone should consult their doctor for proper treatment.
Why is there so little information about spherocytosis and COVID-19?§
Hereditary spherocytosis is a relatively rare condition, so there are fewer shared patient experiences available online.
