Certainly, HAE Day means different things to all of us based on our unique experiences. But as we
move forward, we will see a better future when we move forward together, as a united community.

Be sure to check out all the information, including an HAE Day tool kit created just for you,
by clicking on the HAE Day tab at www.haea.org

May 16, 2012 is coming soon! What does HAE Day mean to you?

My symptoms started around age 14 with stomach swelling, vomiting and diarrhea.  Triggers at that time seemed to be stress.  I’ve missed several days of school and work over the last 27 years and I’ve had multiple procedures and blood work to try to find out what was going on – everything from a lower and upper GI to a colonoscopy.

The results of my GI procedures and colonoscopy prompted the doctor to note in my medical records that he believed my condition was psychosomatic!  You can imagine my range of emotions when I read that – disgust, fear, anger, disappointment, just to name a few.
I have had about a dozen throat swellings – two of which landed me in the ER, still not knowing what was going on.  That ER doctor gave me a brochure about angioedema and I did an Internet search about it.  I found a link about “hereditary angioedema” and did some additional research.  And I asked my doctor to perform the tests for C1 and C4.

I was so happy to finally have some answers after 20+ years!!  My dad and his mom both have HAE and I am pretty sure that my 11 year old son has HAE too, although he has not been officially tested and diagnosed. I am currently being treated with steroids and it has worked wonders for my life.  Any attacks I have are mild and I have not had any throat swellings since being on the steroids for the last 2 years.
Thank you for reading my HAE story.

All my life I dreamed of being a mother.  And even after I was diagnosed, I never realized the impact this disease would have on me and my family.  Luckily, when I had my first daughter, my doctor did enough research to realize I would need a plasma transfusion prior to my c-section.  I was blessed to have two more daughters.

In my twenties, I was constantly having flare ups of my hands and feet and also started having more and more stomach, facial and throat swellings.  So after my third daughter was born I went on anabolic steroids for a year or so.  It did not stop the attacks and only made me moody and irritable. It was not how I idealized motherhood.  So I went off this treatment.

The doctor who put me on the steroids was also able to give me more updated information than I had ever received.  In the 1970’s and 1980’s there wasn’t a lot of information.  He also told me I should have the girls tested, although he wasn’t sure if it the tests would show up in young children.  The girls were 9, 7 and 2 years old.  The results showed my oldest and youngest daughters had inherited HAE.  I thought I would need to be prepared for the day they had an attack.

As my attacks became more frequent in the 1990’s and later, I would periodically check around for a doctor where I lived who could or would treat the girls and I.  No luck. I would check out web sites for any new information I could find.  And still there didn’t seem to be any help or hope for us.

In early 2009 after a bad attack, when my future looked uncertain and I reached my lowest point, two major things happened to change my life.  The first was my hospital hooked me up with an HAE-treating hematologist/oncologist in my area and the second was I discovered  the HAEA web site and the information there about new FDA-approved HAE medicines.  Finally, I had hope not just for me but especially for my daughters.  They had already started having attacks and watching me struggle was not easy for them to deal with, knowing they were looking at their future as well.

I have been on an HAE therapy for over a year now and have had great results.  The girls are not on it yet, but I see it in their future.  We have an emergency treatment plan in place.  When they have an attack, I know we will have a positive outcome …something my parents could only hope for.  My husband and I are forever grateful for the strides that have been made on our behalf.

Hawaii constituent Donna Davis presented a plaque to Sen. Daniel Inouye (D) and Georgia constituent Joyce Wilmot presented a
plaque to Sen. Saxby Chambliss (R) in recognition of their joint sponsorship of the HAE Awareness Day Resolution unanimously passed
by the Senate this past February. (http://www.haea.org/news/u-s-senate-declares-may-16-2012-as-hereditary-angioedema-awareness-day/)
It’s cherry blossom time in DC and the cherry on the US HAEA advocacy cake is the amazing strength we have as a united community. Together
we are a strong voice in Washington. The Resolution was a huge achievement for a tiny rare disease community, but only the beginning!

My treatment was with androgens, but they did not always work for me. I would have severe stomach attacks where the excruciating pain would leave me on the bathroom floor vomiting for ten hours. I’ve had laryngeal edema where the swelling was so bad, if I tried to take a sip of water it would come out my nose. I came very close to getting a tracheotomy.

My last job became very stressful which led to an HAE attack in my face and throat. I was in the ICU for four days. The doctor came in and told me I was forbidden to go back to that job because of the stress I was under.

Not too long after that, I had heard through the HAE Association that a new medicine was approved by the FDA. I notified my doctor and she was getting all the paper work filled out.

Meanwhile, I had tickets to go to a concert, and my friend brought a friend. I just happened to ask her what she did for a living and she said she worked with a pharmaceutical company that made medicines for people who have rare blood disorders. Well, my mouth dropped to the floor. I could not believe my ears! I told her that was me. We both were freaked out. Then I told her about new FDA-approved HAE therapies. She helped advise me.

Since I have been on medication, my life has not only changed, but I am alive! I truly believe the timing of this medication was a miracle. There were two episodes of receiving medication that literally saved my life. And now I do not have to suffer vomiting on the floor for 10 hours ever again. I can not express my thanks enough to companies who make HAE medicines and to the HAE Association for everything that they do.

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.