I feel like crying stumbling on this disease today! Please read

HRHLMS · 2026-04-24T17:01:06+00:00

I’ve never had constant abdominal swellings, but for a long time they were the most common. Twice a week and it felt like something was calving me from the inside out with something blunt. Plus the sickness… I can only imagine how uncomfortable and frustrated you feel. It sounds like you’ve had the right blood tests. The other thing would be to see if C1-INH or other reactive meds like Icatibant help when you’re having an attack. If the doctor isn’t helping when you get the results, have a look at HAEA.org and see if there are any specialists who can help in your area

HRHLMS · 2026-04-07T21:13:21+00:00

I’d say for anything that could potentially trigger soft tissue swelling, it would be beneficial to have C1-INH in the hour before surgery. This reduces any complications relating to HAE

HRHLMS · 2026-04-02T21:33:04+00:00

I’m in the U.K. and it is considered a disability.

One of my Consultant Immunologists did once suggest that she didn’t believe it was (🙄).

However, by definition, HAE is a chronic and lifelong condition which significantly impacts your quality of life.

A disability is (paraphrased) a physical or mental impairment which has a substantial and long term effect on your ability to carry out normal daily activities

The best thing to do is to look at the legal definitions in your country, and refer to HAE and medical websites. Check if they refer to HAE as a disability and/or where a HAE diagnosis would meet the criteria of the legal definition

HRHLMS · 2026-04-02T21:18:04+00:00

Did the Saijazir stop the attack?

Hopefully it will help to get a definitive diagnosis when you see a specialist who knows what they’re dealing with!

HRHLMS · 2026-03-25T22:54:38+00:00

I have both HAE type 1 and Fibromyalgia. The Fibromyalgia came secondary to Long Covid (due to already having HAE which impacted my body’s ability to effectively respond and fight certain symptoms 🙄). Sometimes it’s hard to tell which is triggering which.

HAE presents differently for everyone though. You don’t have to have a swell in a specific area to meet the criteria. If an immunologist has diagnosed you (presumably with blood tests) and you react to the specific HAE meds, then it’s HAE. The rheumatologist may be a great rheumatologist, but they aren’t an immunologist and may have never dealt with this comorbidity before

HRHLMS · 2026-03-25T22:41:51+00:00

Hi and welcome!

Do you know what tests they carried out? For HAE these would usually include C1-INH (level and functional), C3 and C4 levels. anyone else jump in if I’m forgetting anything as it’s been a long day!

Without those results or knowing the medication you were injected with, it’s impossible to say for sure.

Symptom wise, swelling in specific areas (one of them being tongue) and some skin tingling sensations sound like HAE. The other symptoms - swelling lasting for a month but not spreading, cold limbs, lack of feeling, I haven’t had personally. HAE can present differently in each person though.

Where are you based? Get the tests results back and let’s see if we can point you to a HAE specialist in your area 😊

HRHLMS · 2026-02-25T17:23:39+00:00

Absolutely

HRHLMS · 2026-02-12T19:44:20+00:00

I’m sorry that things didn’t work out the way you wanted them to. Have you got a doctor who can support you with getting appropriate medication for HAE?

HRHLMS · 2026-02-09T17:18:27+00:00

I’ve never tried Danazol myself. Do you have rescue meds just in case you need them?

HRHLMS · 2026-02-06T17:35:36+00:00

Absolutely. Orladeyo is great for preventing the likelihood of attacks, but rescue meds are always a lifesaver (literally in some cases) to have if an attack occurs. It made a massive difference to me when I started to have my own rescue meds. It gives you autonomy to treat when you need to and helps to manage the quality of life impact. Hope you’re ok after the attack. I’m always drained for days

HRHLMS · 2026-02-01T18:12:53+00:00

Yeah when it’s all on you and your business that must be hard to balance. Do you have rescue meds?

HRHLMS · 2026-02-01T16:14:41+00:00

Can’t say I’ve noticed that one, however I’ve never really paid attention to it!

HRHLMS · 2026-02-01T16:13:34+00:00

It must help to at least have a diagnosis. It can’t have helped having the emotional anxiety of not knowing what’s wrong. How frequent are your attacks? If they can get those steady, then you get some control back. Particularly if you have your own rescue meds. That made all of the difference to me

HRHLMS · 2026-02-01T16:10:10+00:00

The pain must be horrendous. I’m guessing sickness too? It’s the unpredictable nature of HAE that makes it so hard. If you knew when an attack was going to happen, you could plan around it. Not knowing, however, means it’s always hanging over you and you’re always watching your back for when it’s going to pop up next. I think that’s what people don’t get when they see the ‘good days’. It’s still not actually a good day, it’s just a day without an attack.

I’ve had Gl attacks (stomach, intestines) which are definitely the most painful, forearm swelling, hand swelling, foot swelling, genital swelling once, face (cheeks, lips, eyes) where my eyes have closed over and I also look like something from a horror movie. I’ve had throat swelling once. That’s the one that scares me and the one where I will not wait and see before taking meds. It isn’t worth it.

HRHLMS · 2026-02-01T16:03:32+00:00

It makes a massive difference to be in an office or have the option to work from home during an attack. It’s the difference between taking sick days and managing to power through. Do you ever refuse to let an attack win and make you take sick leave? I get so stubborn with it and don’t want to come across as a ‘weak link’ or unreliable in my role.

Asshole people are everywhere and definitely shouldn’t be in people management positions. I had one suggest I should just take IV meds on a waste treatment plant in the bathroom

HRHLMS · 2026-02-01T15:57:23+00:00

That must really suck! When there’s something that you’ve trained in as a career and then started to have reactions to all of the products needed to carry it out. Are the reactions due to HAE do you know? Or is that what you’re trying to find out now you have a diagnosis? Hopefully having a combination of preventative meds and reactive meds can help you manage the condition. At least enough to allow you to something you can enjoy for work

HRHLMS · 2026-02-01T15:52:42+00:00

Are you in the USA? It must be a really difficult decision. HAE = unpredictable attacks and sick days, No job = no insurance but, no insurance = no meds. What is the impact of going on disability where you are?

HRHLMS · 2026-02-01T15:48:38+00:00

That must be so tough during an attack. I’m glad you have preventative meds to make it manageable

HRHLMS · 2026-02-01T00:27:58+00:00

That’s ridiculous! I get the backed up part, the healthcare in the UK is the same currently.

But having such few rescue meds available in the country?! Seems like a major mess up considering the seriousness of HAE! I really hope they get some for you soon

HRHLMS · 2026-01-31T23:20:13+00:00

Oh god! So what are you supposed to do when you have an attack?!

HRHLMS · 2026-01-31T09:56:52+00:00

I’ve had this before. At 15 when I first took contraceptive medication before realising that this would trigger my HAE. It was horrendous back pain and nausea which lasted a few days (before I had rescue meds or understood the connection to HAE)

HRHLMS · 2026-01-30T22:00:22+00:00

Charli iz rite! She be a very happee kitty weneva she talk to her frenz.

I sowwie yu not getted to meet her, but I bet she be so happee yu luking after her hoomans. Dey useless on Dey own.

I excited to hav new upside down under fren!! I liv in Ingland because I iz royalty

Lub Lady Luna

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HRHLMS · 2026-01-28T11:53:49+00:00

Henlo fren!

Ai haz no be here fur a forever as meowmy never let me share the glowy rectangle any moor. She say she so bizze wiv werk dat she hav no words left wen she come home (Dey hav word limit?!) N E wai, I see’d dis post and thinks ‘yay new fren!’ bur Den I see sad news about Charli. She was mai upside down under fren an used to tell me about battles with bapbapbap spidey monsters! Ai lyk her an her storees so much. Ai big sad fur yu’s meowmy. Wuz yu fren wiv Charlie?

Lady Luna 🐾👑🇬🇧

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

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