My name is Hope and I am 55 years old. I live in a small town in Utah. I was diagnosed with HAE in 2010.

My HAE story begins with my first pregnancy at the age of 34. Before that time I had no noticeable symptoms, except a severe allergy to bee stings. Just a few days before delivering my son, the bottoms of my feet began to swell and felt as though they had been stung by bees. I thought it was just an odd symptom of pregnancy. After having my son I continued to have swellings, rashes, itching, burning, severe intestinal cramping and diarrhea. The symptoms stopped with my second pregnancy at age 36. They started again after I stopped breast feeding my second son. When my periods resumed, I noticed things were much worse during my periods.

Soon I was completely disabled by symptoms. My children grew up with a mom spending hours in the bathroom in agony. My face, hands and feet were often grotesquely swollen. During my many trips to the ER, nothing worked to reduce the swelling except time. I went to an allergist (the best the University of Utah had to offer) and after testing for numerous allergies, he found nothing and suggested that I not take hot showers (only use warm water) and faithfully apply natural oils to my skin after showers or baths. I followed this routine religiously and, of course, to no avail.

During my HAE journey I found I could not tolerate ibuprofin and very little aspirin or Tylenol. This severely limits, if not eliminates options for pain relief! I was once in the hospital with a swollen, painful belly, was refused treatment, and told I was “drug-seeking”. I was not asking for anything for the pain. I learned to manage my symptoms as best I could, but missed many days of work and endured much pain and embarrassment because of something I could not explain. I also had enough common sense to know it was not “all in my head” as some people suggested.

I had just had a particularly bad period of symptoms lasting many months when I heard a voice on TV talking about symptoms just like mine! I was left in tears as I listened to the story about HAE on a medical program. I felt overwhelming joy when, for the first time, I knew I wasn’t alone in my struggle. I took the information to my doctor who diagnosed me as HAE with Normal C1INH. At that time there still was no treatment for me, but at least I knew it had a name, and that gave me great comfort.

I have just recently found the HAE website. I have much to learn, but I am thrilled at the possibility of treatment. I want to learn all I can and advocate for myself and others like me. I want the world to know the truth about HAE.

Above is a picture of my dad that he took himself about 4 hours before an HAE attack (brought on by an abscessed tooth and a sinus infection) killed him. His throat swelled shut standing in his front yard. This wasn’t the first facial swelling. Even so, he had decided it wasn’t severe enough to go to the hospital. He waited – he waited too long. He passed away at the age of 47 just a few days after Thanksgiving. My father suffered for 33 years of his life swelling at different times , in different places – his face, hands, feet, genitalia, as well as stomach and intestinal tract. He sometimes swelled in several places at once.

My sister began swelling shortly after she became pregnant with her first child. She assumed it was related to the pregnancy and could not, would not believe that she was swelling like our dad did on so many occasions. She was finally tested shortly after dad died and was diagnosed with HAE Type II. She spent several years on very heavy pain medication daily (per her doctor’s prescription) to try to prevent the pain of the swelling that had started coming several times a week. Recently she had a port put in her chest to receive infusions every 3 days. She now only has attacks about once a month and the severity has decreased significantly. Thankfully none of our children have been diagnosed with HAE yet.

Although I tested negative for HAE, I do swell on occasion, just not with the severity or for the length of time that seems to trouble the rest of my family.
Thank you for reading my HAE story.

As a child, I remember having minor, annoying swellings of my feet and hands and I remember having 3 day “stomach aches” that I couldn’t describe to my mom when I was a teenager. I had my first acute swelling in my foot as I neared college graduation.

For the next 20+ years I experienced unexplained, acute, feet, hand and abdominal swellings. I was fortunate to never have experienced a swelling during pregnancy.
When I turned 40, I started early menopause and fluctuating hormones along with stress, wreaked havoc with my HAE. I experienced a severe abdominal attack when I was 41, and this led to my journey for answers. I knew I didn’t want to experience another attack like that ever again. I went to several medical specialists before I was finally referred to an allergist who was knowledgeable about HAE. He tested me and helped me find an HAE specialist in the D.C. area. Since then, my mother and all 3 of my children have been tested.

As a mom of 3 young, active children, I didn’t want HAE attacks to slow me down, but they did. When my foot would swell up and I was unable to get my shoes on and mobility became an issue, my husband would take my place if I had committed myself to events for the kids, like scout meetings, or chaperoning school field trips. When my hand ballooned up, I became self-conscious and didn’t want to be around people. I would wear long sleeved shirts that covered as much of my hand as possible if I had to go out in public. Abdominal attacks would put me in bed for 3-4 days, and my husband would have to take several days off from work to care for our children.

I sought medical treatment for a couple of my attacks prior to my HAE diagnosis. Since being diagnosed, I feel very fortunate to have found a wonderful HAE specialist who has really helped educate me about HAE and treatment options. I have never had an issue with insurance or access to medication.

To this day, I have yet to medically treat an HAE attack, but I have a new medication on hand and I am ready. My hormones seem to be leveling out and the stress in my life seems to be minimal (for now) and just having medication on hand does wonders for my peace of mind. For the first time in several years, I feel like I have my HAE in check and it doesn’t have me. Life is goodJ

My Father had his appendix out, cut open like a frog, twice when he had his abdomen swollen. My father, my family and his doctors had very little knowledge about our condition. There were 9 of us who we knew of who had swelling, including my late grandfather and uncle.

I was diagnosed with HAE, when I was 14 years old, by a European doctor who was doing research at Children’s Memorial Hospital in Chicago. I remember during my stay, they put newspaper on the mirror so that I couldn’t see my face. My doctor had a long talk explaining HAE to both my mother and me, that it was in fact hereditary and I could pass it on to my own children. He also told us that there was medicine in the UK not yet approved in the US. I was told I should never take any steroids or play guinea pig for this condition.

I lived the last 10 years in and out of the hospital. I thought I could control my attacks with the help of a little bit of painkillers. I became pregnant in Feb. 2010 and the following 9 months I was swelling free! But after I had my C-Section it all began again, my face hands, feet and abdomen!

Stress levels hit an all-time high, dealing with the loss of my grandmother, moving away from home, being a new mother and living with my military husband. I had my first attack in my throat in November 2011. It was an “easy” process – knock me out, intubate me and I wake up and live life again.

In January (2012), HAE got the best of me. I went to the ER, saying I was having an attack in my throat and having trouble swallowing.  After waiting an hour to be seen, my husband and I explained everything to the doctors again. I was told it was tonsillitis and sent home and time was running out for me. On the ride home, I kept telling my husband I couldn’t breathe. As soon as we pulled up in front of my apartment, I became frantic. I collapsed. My husband performed CPR on me and realized the swelling wasn’t allowing air into my lungs. The paramedics were called. My body lay lifeless for 7 minutes. I went into both respiratory and cardiac arrest.

I went to two hospitals and woke up 5 days later.  I started on C1-Inhibitor and have dealt with the aftermath of the shock and neurological damage I suffered. I have recovered about 95% and do not remember anything of that day. I am blessed to have been given a second chance because HAE is not going to own me, I WILL OWN IT!

After the birth of my oldest daughter, Morgan, 15 years ago, my attacks increased. They increased dramatically again after my youngest daughter, Kylie, was born 8 years ago. I had excruciating stomach attacks monthly, almost without fail. A few years ago I reconnected with some great HAE specialists. They have become family to us.

Both of my girls were diagnosed with HAE. Morgan’s attacks really picked up speed the last couple of years and she has really struggled this past 2 years. Morgan receives twice weekly infusions. Kylie has been experiencing stomach and visible swelling as well. Both of the girls and I have attacks on a regular basis. It is a daily struggle.

It is one thing to live with this disease yourself, but a totally different emotion watching your children deal with it. I am proud of how strong both of my girls are. I am so thankful we have HAE medicine available to us now. Also we are blessed to not only have the wonderful support and compassion from our doctors office and the HAEA, but also from our family and friends. It certainly is not easy to live with HAE, but we take it one day at a time and are grateful for the good days and keep the faith during the bad.

I have played sports my whole life. I am very athletic. Last Fall, I took a hard hit on the stomach while playing volleyball. Ever since then I have had the most severe abdominal pains, along with nausea, diarrhea, vomiting, passing out, and dehydration. My mother and 3 of my cousins have been diagnosed with HAE, so it led us toward the idea of me having it myself.
I have had problems with my tonsils, hip, and abdominal areas swelling already. Problem is, no one around where I live knows anything about this disease.

We travel 2 hours away to the doctor in Missouri that diagnosed me. Everything is hitting me all so fast, between stressing about school grades and work, being told I can no longer play sports,
informing the people around me about HAE, finding the medicine to treat it, and knowing when to inform someone while having an attack.

I have been in the hospital once and am prepared to go at any second, if needed. Hopefully we get the hospital to understand the right medicine and everyone informed and prepared.

Thank you for reading my HAE story….

When I was 6, I was getting frequent attacks and doctors would just say it was allergies.  They also thought my swelling was a side effect of my heart surgery three years before, but everything the doctors tried failed or made my swelling worse. I would swell up everywhere and almost for every little reason. I played football, but it soon became harder for me to play.

When I turned 8, I had an attack that almost collapsed my esophagus which would have made it impossible for me to breathe. While other doctors were certain I was an abused child, a young doctor read my medical records and researched my symptoms. He finally came to us saying he thought I might have Hereditary Angioedema. After a few tests, we knew it was true. I had a diagnosis, but no one knew what to do or how to treat HAE.  And then they began to doubt someone so young could have HAE, so they released me from the hospital.

A week after I was released, another doctor said he could help me.  He was an allergist who had two other patients with HAE and he gave me a medication approved for my symptoms. Then my mother was tested and found out that her frequent attacks of abdominal pain were also due to Hereditary Angioedema.  As I grew older, I was picked on or left behind by athletic teams because they just thought I was weak.  Before I discovered the HAEA website, I thought I was alone.

Medication has helped me.  I am now 18 years old and I have been able to play football as a starting tackle and join a marching band as a percussionist. I am a part of the Sandra Day O’Connor Criminal Justice Academy, Law Enforcement Skills USA, and am now the Sergeant Major of my school’s JROTC program. My name is Roberto and my mother and I are not alone anymore in having Hereditary Angioedema.