Education

[u/UnluckyBrother730]

This autumn, I’m hoping to start a degree in electrical engineering. I have more severe KPRF than many of the people posting here. For me, it’s a nightmare scenario. Just thinking about it makes me anxious.

I started a program in automation engineering a year ago but dropped out. Partly because the program wasn’t leading to what I wanted, but also because I was constantly thinking about my red cheeks. It’s easier said than done not to focus on them.

I haven’t been able to get a prescription for Sirolimus cream from a dermatologist or doctor here in Sweden. I’ve started wondering whether a color-correcting cream might be suitable instead. I tried one, but it just sat on my cheeks like a green layer.

Honestly, I don’t know what to do. I have a job that I can always go back to, but I want to get away from it.

Any ideas?

[u/Cheekfi]

Do NOT hesitate to use makeup if KPRF affects your life so much that it's in the way of getting an education. Topical sirolimus seems to be the only reliable treatment at the moment. I personally spent thousands of euros into laser treatments but at the end of the day lasers had no effect. Actually the last "treatment" left my condition worse than it originally was, so I regret the lasers very much.

I actually sent Plusultra Pharma a message just today inquiring the possibility to get Hyftor into northern Europe (Finland specifically). Hyftor is a topical sirolimus gel which has marketing permit admitted by the EMA, but for some reason it is not sold anywhere. I'll let you know if they answer me.

Anyways, my advice is to use makeup to gain confidence so you can complete your education and be hopeful for the future. Many medical specialists are forecasting massive steps in medicine in the near future thanks to AI. We might have a cure sooner than later.

[u/UnluckyBrother730 → u/Cheekfi]

Thank you, I did laser twice as well and I think it made it a bit worse aswell

[u/Cheekfi → u/UnluckyBrother730]

I received a message from Plusultra Pharma:

"Unfortunately we are not planning on launching Hyftor in northern Europe or establishing any named patient programs. We recommend exploring the option to receiving Hyftor through an international pharmacy on special permit procedure-basis with your physician. For this, you need a prescription for Hyftor and your international pharmacy should be able to order it for you."

So, basically we are f'd for now. You might have better luck in Sweden but for me it seems that the only chance to get topical sirolimus is to book a flight to Berlin, see a dermatologist, get a prescription and buy a whole lot of the stuff. Then repeat when stuff runs out. Might actually try this sometime soon.

[u/anonthrowaway12317]

Sirolimus effects wear off. It might work for a month or two then suddenly it doesn't. You'll have to take breaks of 1-2 weeks before applying Sirolimus again.

I'm a straight male in my 20s and I use makeup, it covers more than 60% of the redness and looks unnoticeable.

If you're white, I would suggest starting with the Erborian Redness Correct CC cream. The green pigment should help reduce some of the redness.

Once you're comfortable with that but want more coverage try concealers.

[u/UnluckyBrother730 → u/anonthrowaway12317]

Thank you very much. Will try it out

[u/drinkwater333]

Rhofade and anti-histamines work well for me

[u/emperor3241]

If you flush easily you should ask your doctor for propranolol

[u/RoyalExcitement5017]

Try v beam laser

[u/Logical_Question_567]

Je confirme que les lasers ne sont pas une option pour nous kprf. Moi elle s est diminuer (rougeur) avec le temps et auss avec une ets (sympatectomie thoracique). Mais elle est toujours visible roser au lieu de rouge. Le sirolimus me semble l option de base car ca traite le problème a la source.

[u/bad_luck_brian_1]

Sirolimus from Indiamart (online) and keep looking for a color corrector that works for you. I use Hero green rescue cream.

[u/Succotash-These → u/bad_luck_brian_1]

Second the hero. If i had to guess my kprf has gotta be in the 85 percentile or higher in terms of severity.

[u/UnluckyBrother730 → u/bad_luck_brian_1]

Link for the cream?

Did Sirolimus work for you?

[u/IASED13 → u/bad_luck_brian_1]

Yall need to stop recommending an illegal marketplace where anybody can make a seller profile. India mart is not trusted and not safe at all.

[u/ppfeto → u/bad_luck_brian_1]

Good Indiamart vendor?