My symptoms continued and seemed to worsen as my stress levels went up. I consulted doctors and was tested for a variety of conditions to no avail. Finally, as a last resort, they diagnosed me with Crohn’s disease, placed me on some medications and monitored my diet. I lived with this diagnosis for 15 years. In 1996 I became the full-time pastor of a small rural church. Things went well until the stress of the job increased my symptoms and I ended up with a major attack and a blocked bowel. They took me to surgery to remove the portion of Crohn’s disease that was causing my problem, but could not locate it. After an extensive exploratory surgery, they sent me to the Mayo Clinic where I was finally diagnosed with HAE at the age of 36. While it was a relief to find out the cause of my health problems, it was discouraging to find out there was no real therapy. I began to be treated with androgens at that point.

Taking androgens daily helped slow down some of my HAE symptoms, but also added side effects that were difficult to deal with. I became a different person emotionally and had to adjust the dose to find a middle ground between feeling better and the emotional side effects. Pain management became a significant issue and the HAE attacks seemed to get worse, occurring several times a week. I struggled to manage my pain while I wrestled with the guilt of being considered a “drug addict”.

In 2008, my doctor told me new FDA-approved HAE medicines were becoming available and would change my life around. Needless to say I doubted that and decided I would believe it when I felt it. In 2009, I finally got my first dose of my new medicine and could tell a difference within an hour. After taking it for several months and adjusting my treatment plan, I am mostly symptom free and feel as normal as I have felt in 30 years. My life was indeed changed around. I no longer needed all the other meds and I committed myself to getting off of them. With medical help, I was able to accomplish that in March of 2009 and have been free of them since.

Now I am back to working full time and am able to function more normally than I have for many years. Thanks to HAEA for their wonderful support and educational help they have given me and my family.

My first attack was when I was 12 yrs old and it was a stomach attack. It peaked while in church services at my catholic school. I woke up in the nurse’s office about an hour later still in crazy pain.

I always knew my dad battled random pain, but never knew why. I later found out my uncle and father had battled this pain their entire adult lives, but in different ways. My grandmother had had her spleen and appendix taken out in the 1950′s due to stomach pain, and no one could explain her symptoms to her.

My next attack wasn’t until I was 20 and it was on Christmas Eve. My feet, hands, and testicles were all swollen at the same time. None of these had ever swollen before, so I called my father. He finally explained to me what I was dealing with.  In my opinion, he never wanted to believe I had what he did.  After this attack, I started having attacks twice a month. I had just figured out that without medication I couldn’t work and keep my job. So androgens have been a part of my life ever since.

I find myself very lucky to not be my father whose main problem was his stomach. In 2006, my father had a bad cold and his throat swelled up -which had never had happened to anyone in our family. He almost died. From that day forward, I have never taken for granted my less severe symptoms. I think about how to prevent attacks, all the while taking anabolic steroids and wondering about the effect they will have on my liver.
This is my HAE story.

It was on a Sunday after Thanksgiving one year that my face swelled for the first time. I only noticed it when I went to the bathroom to wash my hands – I had no pain from the swelling.  I barely made it to the hospital – a few minutes longer and I would have died.

The swelling progressed to my face, tongue, lips, throat, arm and hand. I was intubated and given medications for allergic reactions, even though there was a documented history of me going to the ER for 13 times during the past year for abdominal attacks from my HAE. This time I was hospitalized for 19 days, mostly in ICU.

My sister contacted Dr. Bruce Zuraw who advised the ICU doctors on what medication to use. I had not been in regular contact with Dr Zuraw for 18 years, but he educated the doctors on the latest, most effective HAE therapies. I had to be intubated a second time when I pulled the tube out. I was so swollen and disfigured, the doctors barely got the tube back in. I could not breathe on my own, so I had a tracheotomy.

Eventually, I was treated with one of the new FDA-approved HAE medicines in the hospital and I now am on a regular treatment plan. I had my children tested when they were toddlers and I was told they did not have HAE. I learned later that the C-1 level and the C-1 function should be tested along with C-4. My children were retested and my 16 year old son has HAE. Lois Perry explained that sometimes you can get a false negative. 

I will soon turn 51- I was diagnosed at age 28 – but in all this time I have never had facial swelling or multiple areas swell at the same time. My swelling was in my hands, feet, stomach and bottom if I sat on something too hard or for too long. Most of my attacks I self-managed. I went to the ER for medicine if my stomach attacks became too severe from the vomiting. I never thought that my throat would swell and it still scares me that I came so close to not making it.

My advice is to not assume that just because you have not had a throat attack, that it cannot happen at any time. It can. I now carry a written letter with me to bring to ER in case my throat swells, with details on what medicines to use – or not use. The hospital is keeps medicine on hand. I have a support team – my family, the hospital staff, the HAEA and Dr. Zuraw. I am still scared about my throat swelling but I feel safer with a treatment plan in place. 

I tried for decades to find a way to stop the agonizing abdominal attacks that began when I was 13 years old. After several doctors could find nothing wrong with me, I tried on my own to save myself. I began to make repeated dietary changes, I searched my home for toxic substances, I attempted to practice relaxation techniques that would eliminate stress from my life, and I made bargains with God. Each time I went a couple of weeks or more without an attack, I became hopeful that I’d finally found the solution. But every time my hopes were dashed. Soon I’d once again feel that familiar, yet indescribable, sensation that preceded my attacks, and again be plunged into the abyss of pain that accompanies an acutely swollen intestinal tract.  

It wasn’t until I was 35 years old and had been through many medical twists and turns that I finally heard the words “Hereditary Angioedema.” I was simultaneously relieved to learn why I got so sick, and horrified when I was told that the only available treatment for me was anabolic steroids – androgens. When the doctors told me what the potential side effects were, I struggled with the question of whether the treatment might be worse than the disease. I was willing to cope with these issues for myself, but when my daughter, Nicole, began to display symptoms, I would have gladly cut off my arm if it would spare her the suffering and lost years I had experienced. When she had to begin taking steroids as a teenager, I felt tremendous sadness and guilt that I had unknowingly passed this monster on to her. 

 When I received my diagnosis in the late 1980’s, there was no HAEA, and very little information was available. HAE was a dark, mysterious, sinister disease that I feared and despised. As the Association formed, grew strong, and new treatments were discussed and developed, I began to have hope that my daughter would have an easier life. When she received her first shipment of a new FDA-approved therapy, I felt a flood of gratitude wash over me. Nicole now capably and confidently treats her HAE, has control over her life, and is pursuing her dreams. I have also have an HAE treatment plan in place. Though not a perfect solution, my endless effort to build my house of cards has become unnecessary. I can open the windows wide, let the breeze come in, and know that we will withstand the storm.  

When my mom passed away from laryngeal edema while she was in the hospital, I made a vow that I would not stop until I learned all I could about Hereditary Angioedema.  I recall that when my mother passed (at the age of 44) she still had a paper she was given by a local physician who used to come to their house to treat the family’s HAE.  On that paper, in 1951, he wrote “H.A.N.E.”  This was for Hereditary AngioNeurotic Edema, which we now know as just HAE.

After my mother’s death, I headed to Texas to have access to a large University. I felt they would be able to help me understand and treat my HAE.  Within 4 weeks of arriving in Texas, I had an abdominal episode and went to the University Hospital where they diagnosed me with appendicitis. They immediately carried me into surgery.  I had so much edema in my intestines that when they cut into me, the intestines came out. I had to stay in the hospital until the edema subsided and they could close the incision and send me home.

A while later, I had a laryngeal/tongue edema and I had to press a spoon on my tongue to keep it down. I was given Benadryl at the hospital and sent home.  When I arrived home, I realized the spoon had cut my tongue and I was bleeding.  I doctored myself with ice chips in the back of my mouth until the edema subsided.  Today, we have medicine so that no one will ever have to go through something like this.

The one thing that has astonished me about the medical community is that while I was in the ER for treatment, the attending physician came into my room with several interns and asked me to tell them what I had – I knew more about it than they did.  At that point, it made me feel very alone and sad, but also a bit grateful that I had the opportunity to teach.

Although I have gone through so much with my HAE – as well as a diagnosis of Polio when I was a child – I believe having HAE has made me a more compassionate, understanding person and given me the ability and confidence to be outspoken.  Currently I am advocating for helping elderly people obtain food. I have also worked with animal rescue. The one message I would like to get out to the HAE world is “Don’t fret the small stuff” and not to “ever give up”.  I am also thankful that I have learned how to live in the moment.

Thank you for reading my HAE story.

As time passed, face/hands/feet swelling attacks started to include bowel, intestines, and the esophagus. Internal pain was dramatic but I was learning that a trip to the ER was just an exercise in futility without any resolution. The first time I experienced an esophageal swelling, I thought I was having a heart attack, but it was a continuation of an attack that had migrated from my face and feet. This was a hard sell to my wife at the time, but it turned out to be the correct assessment.

It wasn’t until about 4 years ago, driven by another 10 day attack event, that I searched the web and landed on HAEA.org – you can’t imagine how good I felt! After ALL these years, I finally had an answer – or did I? With the web site information in hand, I began seeing an HAE doctor. Together we investigated the complement system, thyroid, even the Factor 12 mutation – these tests reported back as “normal” – bummer, I thought. OK – I must have Idiopathic Angioedema, perhaps INAE per the table on the HAEA.org web site, because my attacks were unaffected by normal treatment methods.

Thank goodness for the HAEA folks and their highly supportive nature. This became even more apparent when my wife and I attended the NYC area Patient Meeting this last October (2010). We had a fine opportunity to talk with patients, the HAEA support staff, physician specialists, and pharmaceutical representatives. This motivated us to form an emergency plan as well as to discern treatment options that may be helpful to so-called “normal” HAE people. The timing of this meeting couldn’t have been better. Swelling at that time routinely included my tongue, throat, and chest cavity – I was more motivated than ever.

After the HAEA patient meeting, I made another appointment with my physician to share what I had learned and seek possible treatments. The long and the short of it is that although I have been approved for a new FDA-approved therapy, we chose to start with androgens. The result has been unbelievable! Averaging an attack every 8.5 days prior to treatment, they are now down to about one every 33 days – all swells minor in nature thus far. A new therapy may be next. 35 years – how my life has changed!

I first began having symptoms that I now know was HAE when I was 12.  No one in my family has HAE, so it was always a big unknown. Throughout my life my swelling episodes have mostly been around my menstrual cycle – cold weather and trauma have also been triggers. During the early days of my swelling episodes, when we didn’t have a diagnosis, I was told my severe swelling attacks were caused because I was emotional; I wasn’t dealing with teenage pressures, etc.

During my college years, my symptoms continued and despite hospital visits in almost every state from MO to PA, no one knew what was going on.  In May 1984, while visiting an ER in St. Louis, the resident treating me had studied under Dr. Atkinson and Dr. Frank.  He helped me begin the journey to find a treatment plan.  Because I was so sick Dr. Atkinson sent me to the NIH for study from 1987-1989.  We didn’t have a lot of success with any therapies, but I did get my tracheostomy due to my multiple laryngeal swellings and close calls. As with many HAEA friends, since no one really understood the disease and there wasn’t a therapy, I was an outcast.  I had trouble holding down a nursing job regularly because I would get sick so often.  (I still always think it is odd that medical professionals seem be the hardest to reach if you are someone with a rare disease – they just don’t seem to want to listen at times).  In 2005, we moved to Florida to escape the cold weather – one of my biggest triggers.

My life since starting on a new FDA-approved therapy has been amazing.  I was able to get my tracheostomy removed after 16 and a half years! I am able to work full-time as a nurse.  I can now provide support to families that are going through tough times physically and emotionally – since I have been there, it is easier to relate to some of their feelings.

I have also been able to fulfill my lifelong dream of doing medical mission work, including five trips to Haiti where I am developing a medical clinic.  I visit Haiti about every 3 months and without therapy, that would be impossible. I look forward to continuing my medical mission work and working with patients that have life altering medical conditions here in the US.

I am very grateful for the support and encouragement Janet Long and others at the HAEA have provided and this growing HAEA family.  Being able to get support as well as educate each other is an invaluable asset to me and my family.  I am very thankful for all the HAEA does to put the word out about HAE and look forward to the future and increased education – especially for health care professionals.  Knowledge is power!

My HAE generally presents in the abdomen so, like many HAE sufferers, I was misdiagnosed with everything from allergies to ovarian cysts during my teen years.  By my senior year of High School, I had endured dozens of CT scans and pelvic exams, far more than any teenager should have to go through.  I was lucky though, because I had a fairly mild case of HAE until my freshman year of college.

But then it was like a time bomb went off and my HAE just took over my universe.  By the spring of my freshman year of college, I had been in and out of the ER so many times that my parents drove the two hours from their home to my college to pick me up and drive me straight to the Mayo Clinic.

After a full week in the Mayo Clinic (and an entire Ziploc freezer bag full of vials of my blood), the medical team diagnosed me with HAE.  No one in my family has HAE – mine is a genetic mutation, so this diagnosis was shocking to say the least.  For me, however, it was also a relief to just have a name for what was wrong with me.  My family and I decided against using steroids to treat my HAE although it was the only treatment option available at the time.

So, for the next ten years I just endured my HAE episodes – I learned how to manage the stomach episodes on my own.  It wasn’t until 2009, when I had my first baby that my HAE took another turn for the worse.  This time, the post-childbirth hormones and breastfeeding were simply too much for me.  Within the first six weeks of my son’s life, I was hospitalized six times.  It was then that I contacted my HAEA Patient Services Representative and I started taking a new FDA-approved HAE therapy.  Within days, I was healthy and back to my normal self (as normal as a sleep-deprived new mom can be anyway)!

I had my 2nd child in 2010 and was on therapy through the whole pregnancy, c-section, and postnatal months.  I am happy to report that I have been almost episode-free since going on therapy.  This is especially amazing since I had two kids in two years and gained (and then lost) 80 pounds.  All this change, without therapy, would have sent my body into a downward spiral.  I don’t know if I would have survived the last two years without the help I have received.   New medicine has been a blessing in my life as well as all the people at the HAEA who have helped me through the last two years.  I am so grateful for the work the HAEA is doing on our behalf!

There has been no one else in my family with this disease. I had my first signs of HAE when I was 5 years old. I had gone to the local county fair with some family friends and held on real tight on the Ferris wheel ride. Later that evening one of my hands began to swell. My mother took me to the emergency room and I was diagnosed with a likely sprain since no bones were broken. Those swelling bouts continued to happen several times a year, but were unrelated to any real injuries.

I was finally referred to an allergist who decided my swelling was an allergic reaction to things in my environment. Nothing he offered seemed to help, though and my swelling always took its usual course and resolved in 3 to 4 days.

As a teenager, I had some major dental work performed and wound up with severe facial edema. I was diagnosed with an allergy to Novocain. Bouts of facial swelling continued while I was in high school. On day two of my senior trip to Washington, D.C., my face began to swell and I spent a day at a hospital, receiving IV antihistamines. At the age of 19, a new doctor stated that he knew what I might have and a simple blood test would solve the mystery. I still have his letter, dated July 22, 1986, confirming my test results.

So my mystery was solved, and I started on steroids, but I didn’t always take my medication, because I hated the side effects. I did well; no laryngeal edema until I was an adult. I still have break through edema when I consume certain foods. Other triggers for me continue to be trauma – like holding on to the lawn mower and when I wear high heel shoes for more than two hours, the balls of my feet will start to swell. Recently, I had a successful wisdom tooth extraction without any edema. It was still scary because 3 years ago I had facial and laryngeal edema after a routine local anesthesia for fillings and a crown. I have not tried any of the new medications on the market yet, but the next time I visit my doctor I will discuss adding them to my treatment plan.

I want to thank the HAEA for giving me information about treatments and for the HAEA web site – I have referred co-workers and my oral surgeon to visit it to learn the most recent, comprehensive and accurate information that I’ve seen anywhere about HAE