Imagine visiting Yankee Stadium and being selected and singled out of the entire crowd.
Being born with Hereditary angioedema (or HAE) is a similarly rare event. It’s so rare, in fact, that many doctors aren’t accustomed to diagnosing it and patients with HAE may not receive an accurate diagnosis for as many as 9 years after experiencing their first symptoms.
9 years is a long time for anyone to wait for a diagnosis, but for those living with HAE that time could be fatal. HAE is a potentially life-threatening condition that causes episodes of swelling in the hands, feet, stomach and even the face and throat. These swelling episodes are not only uncomfortable and painful, in some instances, they can be life threatening when swelling of the airway causes asphyxiation. The kicker is that predicting and preventing HAE swelling attacks is hard. No one is sure exactly what triggers these attacks.
We want to help raise awareness of HAE amongst the general public and medical community. So, we decided to ask people with HAE what they wished people knew about their condition. Here’s what they had to say:
1. Hereditary angioedema (HAE) can be an “invisible illness”.
“Just because you can’t see it doesn’t mean we aren’t suffering.” – Krista
“Even though I may look healthy I still have to fight with this disease every day. [I’m never] quite sure when the next attack will happen.”
“HAE is a very scary disease. It can strike without warning, at any time of day or night. Symptoms and frequency of attacks vary greatly in different people. Sometimes the symptoms are not visible, but that does not mean that they are not there and not impacting the person experiencing them. I would like the medical community, especially doctors in ERs, to admit that even though they haven’t heard of the disease, that it is real, and people really do suffer from it. If you are a doctor, and have a patient that has HAE, and you don’t know about it: Call someone who does, don’t dismiss symptoms and treatments just because you don’t know.” – David
2. HAE is a serious, life threatening condition which comes with a lot of worry.
“It’s very dangerous and you can die from it.” – Tasha
“[I am] always wondering if an attack is going to happen and worrying that I’m going to pass it down to my kids.”- Jenni
“It takes over your life.” – Kim
“Attacks can come at any time you don’t know when they will happen.”
3. Support means everything to those living with HAE.
“Sometimes I can’t even take care of my kids…you need a support system because with HAE you can’t go at it alone.”
“Talk to your colleagues, bosses, teachers, coaches…let them get familiarized with HAE”
“It’s hard being away from my family all the time because I’m intubated or in the hospital. I really wish sometimes HAE would just disappear!”
“With proper treatment and education you can live a fairly normal life with HAE.” – Jay
4. Life with a rare health condition can be lonely, frustrating, and costly.
“It is such a random condition…some people respond well to treatment and live normal lives, others don’t. It can appear at a young age, adolescence, or late in adulthood. It seems every case is different, and that makes it difficult for people who aren’t diagnosed to understand what’s going on with their bodies.”
“It’s not contagious. I wish doctors understood that not all of us are drug seekers!! It’s real, and it’s real painful!!” -Janet
“HAE dominates my life. I am a single mom of 4 kids. HAE intrudes on family functions, school events, trips, work and even sleep. I have gotten out of the ER 12am and went to work that morning with 4.5 hours sleep because I need the money. I always plan to have meds with me, know where the closest ER is if I’m out of town. I have seen the panic in my children as they call 911 before I lost consciousness….praying that they weren’t watching me die. There are so many health issues and conditions people deal with, I am not alone in this walk. What scares me so much about HAE type 3 is the missing information. Not totally understanding it, starting medication knowing it’s a trial by error to get something that works.“ – Jenn
“Meds are expensive, [there is] no cure, E.R. doctors are unbelievably rude and ignorant, [it’s] deadly, and HAE is an entire body disease.”
“It is difficult to get the care you should because it is so rare.”
5. HAE can limit work and study life.
“I’ve had to drop out of college twice. My advice would be to know your limits. For example, I refuse to work doubles and require at least two days off in a row every week.” – Krista
“I worked with my employer to make arrangements and have taken advantage of laws, such as FMLA, to protect my job, position, and career. Use all of the tools at your disposal, and ask HR for help.” – David
“I was diagnosed with HAE in my late 30’s, and I’ve been blessed. I have worked for the same company 17 years, so I have protection (so far) for employment and insurance. Know the labor laws for your area/ state. Advocate for yourself, and if you are comfortable- educate work / school about HAE.“ – Jenn
6. Sleep, medication, and stress reduction are critical lifesavers for those with HAE.
“As soon as I feel a swell coming on I need to take my medication.“ – Tasha
“Even the smallest stress can trigger this. I try my best to get enough sleep.” – Maria
“Rest, meditation, zentangles, and mindfulness are key for me.” – Kim
“I try to minimize stress.” – Chuck