WHO IS EMALISS?

 Like many people with chronic, life-altering diseases, I’ve thought often about my illness in relationship to my life,whether or not there is a purpose and whether or not to fight or give up.

At times when I felt alone and helpless and sick, too sick to get out of bed, I’ve tried to think about what I could possibly do to help others and in the end maybe help myself as well.

Sometimes, it seems, some must suffer in order for many to learn and make things better for others coming up behind us. And even though this may sound grandiose I must either believe it or I must give up. I’ve decided to believe it.


In 1981 I was transfused with two units of blood after an emergency C-section. Within a few months I came down with hepatitis B. I recovered and went on with my life. In 1987 I began feeling tired but tried to ignore it. Then, in 1989, after two years of tiredness turned into total exhaustion and I became so ill I had to quit working outside of my home, I was literally homebound. That's when I was diagnosed with hepatitis C. But since very little was known about this disease, which affected me so severely in ways doctors couldn't recognize, and I had a family to raise, I decided that if they couldn't figure out what was wrong than I'd better figure it out myself.

So I started studying medicine from my bed. And for the last 9 years I've been studying and keeping up with the most current research, discoveries and treatments. I've also studied human anatomy, biology, general medicine as well as the specialty areas of gastroenterology, the immune system, the endocrine system, psychiatry and how they interrelate.

But I found out right away that when I walked into a doctor's office armed with knowledge I'd found on this subject or that subject I was often discouraged from reading since I "might misinterpret what I read, best leave that up to the experts". I kept studying anyway but stopped telling them I knew anything.

I do have one fond memory of my first meeting with a doctor at Mayo Rochester who I finally went to see during a period of such severe illness that I needed help walking and had to ride around the clinic in a wheelchair. I was still in my "militant" days and went into his office armed with medical literature I'd copied ready to "prove" to him why I was right about my opinions. The literature I'd chosen to copy I felt had been written by someone who obviously knew what he was talking about. It backed up everything my opinions had been formed around.

I presented my copies to this doctor and he chuckled and said "Oh yes, I wrote this." And then he said "You like to read? Here's some more stuff." and began handing me more and more abstracts from other research papers he'd published. He immediately got my total respect and trust. For not only was he smart but he also had enough confidence in his own knowledge and ability that he could allow me to have knowledge too. This doctor also had a special gift that I'd seen in few other doctors. He could see the importance taking care of the patient as a human being and not seeing them as an "it". . . . . His name is Dr. Albert J. Czaja and because he validated that my symptoms were real and not "in my head", he literally saved my life.

The Ask Emaliss magazine is meant to validate and give support as well as educate. I believe there is power in knowledge. I truly hope you find it helpful.

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