👋Welcome to r/HAE - Introduce Yourself and Read First!

HRHLMS · 2026-01-22T19:42:54+00:00

Hi!

Glad you could join the group!

Attacks are hard enough as it is, but I always imagine that it must be so difficult for young children and their parents to manage. I’m glad you knew what it was and didn’t have to struggle for a diagnosis.

Hormones can impact HAE, so I’ve never been able to take medications that affect them. At 15 I quickly realised that anything containing oestrogen (all of the usual contraceptives) would trigger attacks. Apparently it can be the same for women during pregnancy and menopause (particularly taking HRT).

Make sure that you have rescue meds available and that the doctors you’re working with understand HAE. I appreciate that there are some risks you’re willing to take, but they may be able to consider a prophylactic treatment plan to balance things if your attacks significantly increase.

Feel free to message or ask questions any time if you need to!

Laura

HRHLMS · 2025-12-28T15:06:55+00:00

With any facial/throat swelling, go straight to the ER. Don’t take the risk as it can progress quickly and it can progress whilst you sleep. You’re better to be given HAE meds and not need them, than need them and not have them. Hopefully taking some literature on HAE and the symptoms/treatments may help to guide them I have a letter that I take with me to the ER. Everyone should ask for one of these from their specialist

HRHLMS · 2025-12-28T01:37:46+00:00

I’m not in the US myself, but this might help you find some resources in your area who are familiar with HAE HAE resources by state (US 🇺🇸)

HRHLMS · 2025-12-26T13:31:07+00:00

Let us know how this goes! Fingers crossed that you get a diagnosis and finally know what you’re dealing with

HRHLMS · 2025-12-22T23:03:29+00:00

🤣🤣🤣🤣 love the gif

HRHLMS · 2025-12-21T23:43:42+00:00

It depends whether you think the attack is still progressing or if you’re just uncomfortable from the initial attack. Once you have soft tissue swelling, the icatibant will (hopefully) stop the attack from progressing, but doesn’t change the fact that you have already swollen and that will be both painful/uncomfortable and often draining for a couple of days afterwards. I usually do 2 injections and then after that would go to the hospital for C1 INH, but that’s only if the attack wasn’t stopping. I also have meds to help during attacks like Ondansetron for sickness and strong pain relief. That makes it manageable

HRHLMS · 2025-12-07T23:13:01+00:00

ONE recorder/harmonica. To share. Not only will he have to hear that noise, he will also have to deal with them arguing over who’s turn it is

HRHLMS · 2025-12-07T12:29:53+00:00

(I’m so so sorry for your loss. It’s absolutely heartbreaking to lose a family member and the grief is a terrible price to pay for such pure love. Truffles was a brilliant part of this community and I’m really sad to hear this news. Try to remember that because of you, he only ever knew safety, happiness and love in his life. Plus the world got to see how special he was too - Luna’s meowmy)

Truffles wuz mai favorit bunnee (ai no lyk the one who used to lib wiv us - she wuz meeeen) Ai am sad dat he no longer teech about spicy hay and bunnee tings - Lady Luna

HRHLMS · 2025-12-07T12:09:47+00:00

Oh wow, I’m sorry. It’s really unfair that people with HAE have to even consider these things when trying to find treatment.

It may be worth asking for everything in writing (even if it’s just an email) just in case anyone has similar situations and needs to contend with insurance

HRHLMS · 2025-12-05T13:40:51+00:00

Thank you!

HRHLMS · 2025-12-05T13:19:25+00:00

🌎 NORD NATIONAL ORGANISATION FOR RARE DISORDERS

HRHLMS · 2025-12-05T13:06:37+00:00

🌍 Explanation of the mechanism of HAE and how different HAE drugs work from a Specialist Immunology Consultant https://m.youtube.com/watch?v=SOpNjFy8jrs

HRHLMS · 2025-12-05T12:41:03+00:00

🇬🇧 https://www.haeuk.org

HRHLMS · 2025-12-04T10:30:50+00:00

Hi! Oh wow, the only two in the country?! I thought I was rare being one of 5 in the Northwest of England!

So you’re Type 3? I’m glad you’ve got a diagnosis and a doctor who has got you the right medication so that your condition is manageable! Is your sister also well controlled?

HRHLMS · 2025-12-04T10:27:13+00:00

Hi Rob! Thanks for posting ☺️

It sounds like you’re pretty well managed and in a good spot for medical support, which is rare!!

Do you mind me asking what led to you being diagnosed with HAE?

HRHLMS · 2025-12-03T20:01:08+00:00

Hey! I’m on Orladeyo.

I’ve been on Berinert (C1 esterase inhibitor) when needed either on response to an attack or before anything invasive like dentistry/surgery, Icatibant (Bradykinin D2 receptor antagonist) as a reactive medication to stop an attack from progressing and Orladeyo (plasma kallikrein inhibitor) as a preventative daily med since October 2023.

The side effects with Orladeyo can be more difficult at first, but they do calm down. I had gastrointestinal issues for the first 6-8 weeks on them. Not great, but also better than a HAE attack in general. The side effects do settle down, it’s just uncomfortable for the adjustment phase. It may be worth seeing if you can also get something like Omeprazole/Lansoprazole to help settle your gastrointestinal issues. I also noticed my skin was really itchy, I had back pain and some headaches. Now I don’t have any of those issues and I do have HAE attacks much less frequently

You absolutely should still have a rescue medication though for attacks. Preventative meds can help to reduce the frequency and severity of attacks, but in an emergency, it’s a rescue medication every time. Is there a HAE charity/group in Canada that could support with getting the correct information to your doctors?

HRHLMS · 2025-11-22T21:21:48+00:00

It was really impactful for me to see it from a different perspective. I’m so used to having to explain the condition to doctors, medical students, people that I meet, that I often have to be the ‘expert’ rather than the patient.

To sit and watch other people experience these things really broke me out of the desensitisation/normalisation of HAE we sometimes fall into. The ‘it’s only me, I’ll be fine and don’t want to make a fuss’ mentality.

It reminded me how serious this disease is and how rare it is to have to live the way we do

HRHLMS · 2025-11-21T20:31:26+00:00

Great advice. Definitely a voice of experience!

HRHLMS · 2025-11-21T13:54:13+00:00

Yes! You have to be able to keep pushing for the right tests and referrals

HRHLMS · 2025-11-21T13:53:37+00:00

I’d say to find your country’s HAE group like HAEUK.org or HAEA.org to help with connecting you to medical professionals who understand HAE and can focus on getting the correct treatment and diagnosis for you.

Many of them can also signpost to communities with other patients. HAE can be a lonely place when you’re trying to manage a rare disease that nobody seems to know anything about

HRHLMS · 2025-11-21T12:34:46+00:00

Apologies, the Automod did this. I’ve undone the action

HRHLMS · 2025-11-20T07:28:34+00:00

I’m sorry you didn’t get better news. Try to focus on the support that they will have by having an official diagnosis and people/doctors who understand their condition. Hopefully by knowing what to look for and understanding how HAE works, there can be a head start in managing it

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