My name is Bridgett.  My hero is Doctor Karen Winer out of National Institute Of Health.  I would really like to honor her for her hard work on a rare disease known as hypoparathyroidism.

I have had Hypoparathyroidism since birth.  It almost took control of my life. As you will see through my story she really made a difference.

her staff is remarkable I have learned so much from her.

Her hard work is paying off.  She has changed the life of so many people. 

I can't say enough about her and her work at National Institute Of Health.  With out her help i would not be back in college much less getting A's in college.  Getting the right treatment and care has made all the difference.

Our treatment is called HPTH Injection 1-34.  At our 3rd annual conference it is getting closer to getting approved by FDA.

My life for ever has been changed for the better.  Here is my story and what she has done in my life with the right treatment and care.

My Journey

(By Bridgett Garrity)

My name is Bridgett Garrity.  I have hypoparathyroidism.  This means my parathyroid glands are nonfunctioning.  My body is unable to absorb calcium and produce vitamin-D or absorb it on its own.  The only treatment available until two years ago was to take large doses of calcium and dyhidrotachesterol, a form of vitamin-D.

Before I was diagnosed, I had stopped breathing when I was six weeks old.  This happened a few times in the same night, as I later learned from the medical records.  My mother requested a transfer to Children's Hospital in St. Paul, Minnesota.  At the Children's Hospital, I was under the care of Dr. Stanley Leonard.  At first, he was stumped as to what was going on.  Somehow, he was led to test my calcium levels.  At the time I was diagnosed, my calcium levels were at 4.4, which is dangerously low.  It was very rare for this to be diagnosed so early in life, and fortunately for me, Dr. Leonard just happened to be working on an internship paper on hypoparathyroidism. 

My life revolved around getting lab tests two times a week for months, and then later on, once a week.  When you grow, your calcium levels can change a lot.  As an infant, my mom had to make one hour trips to the lab biweekly, and later on weekly.  Under this regimen, I eventually stabilized, and did quite well until high school. I do remember in junior high school having some symptoms.  In high school, I had two seizures.  I remember clearly the first seizure, which took place at a retreat.  I was sitting, listening to a guitarist who didn't have arms.  The next thing you know, my body felt like it was above the church looking down.  I remember how freaked out I was. The second seizure took place at a basketball game, but I don't really recall how this seizure happened.

I was physically active until high school, and I tried to do all the normal activities teens do. When I was younger, I had asthma, and my mom took me for the shots, but they never really helped.  So she started taking me to a chiropractor, and they put me in a swimming pool, hoping the exercise would be good for me.  My dad was offered a job in Colorado, so we moved to Winter Park.  There I had to walk a mile to and from the bus with my siblings.  It was good for me physically, and I also did very well there in school.  When I was in junior high, we moved to Riverton, Wyoming.  In high school, I tried sports, but my legs couldn't handle it.  I joined band the band, and participated in speech.  Speech was the best thing that ever happened to me, as it helped my build my self esteem and it gave me the opportunity to learn.  I learned about government, history, writing, and so much more from students who were willing to help me. 

In school, I was in the special education program, and it wasn't what I needed.  I will always be grateful for speech, as I learned more from speech than from any of the classes I had in Special Ed.  In high school, I started throwing up every morning, and I had a lot of phlegm.  I never felt good in the morning and throwing up caused me to miss a lot of school.  I'm sure it made it more difficult for me to learn.

This problem went on for many years, and being in Special Ed classes didn't help.  For one thing, I knew I could learn, and I had a strong desire to achieve.   It was obvious to me the other kids didn't care as I did.  What I needed was a good tutor to help me mainstream.  Trying to convey this to the school social worker was nearly impossible.  The school, in a sense, could not define or diagnose my disability.  In all areas of my life, I have been known as the mystery child. 

Through determination, I graduated in l989.  I wanted to audition for a music scholarship, but the high school music teacher told me I was not college material.  He would not give me a letter of recommendation.  I auditioned anyway, and was awarded a musical scholarship without a letter of recommendation.  Yes, I had a hard time.  It was due in part to a lack of educational classes I should have had in high school.  I essentially had to start over in college.  I graduated with a one year certificate in Human Services.  For me, that was a start.

After college, in May of 1993, my local doctor found out my thyroid was low.  Instead of dealing with it, he chose to ignore it.  Not knowing enough about thyroid problems, I didn't fight it.  But a month later, I begged my mother to take me to a "real doctor." I returned to Dr. Leonard, who had treated me as an infant and young child.  His first impression was rheumatoid arthritis.  After extensive testing, he discovered my thyroid gland was nonfunctioning, and put me on a very high dose of Synthroid.  For some time, that high dose kept me from throwing up in the morning, but it didn't last. 

In 1995, I had severe pain on my right side.  Nothing helped, and it would take a year for the Army Hospital to diagnose the problem.  They gave me a pelvic exam, a pap smear, and other tests.  Finally the chief of the hospital determined that it was my gallbladder.  He said I had six gall stones, which was unusual, and related to my calcium deficiency. 

In March of 1996, surgery was performed.  It was very difficult to get my gallbladder out, and afterwards my stomach became worse.  I had difficulty eating a lot of foods.  My sister suggested that ginger might help, which it did.  My problem with eating food and swallowing became worse and more severe.  Sometimes when I threw up, it would go all over the room.

I had moved to Wisconsin, and the doctor I was seeing said nothing showed up on the tests.  He refused to run more.  I was at a loss and miserable.  In 2003, I started to have frequent seizures again, so I went to a well known clinic in Minnesota.  They diagnose my swallowing condition.   They found a very rare version of acid reflux.  Once I was put on Flovant treatment, the swallowing problem went away.  It came back the following year, and I went on the treatment again. Since then it has been chronic.

My seizures became more frequent between 2003 and 2006.  I started to experience hallucinations, visions, and double visions.  Having the hallucinations was interesting, but also frightening.  Often it was when I was relaxed that I would have them.  I can remember looking to the wall on my right, and seeing images that looked like a 3-D movie.  During this time, I also experienced severe jerking of my body, which often lasted an hour or more.  Another symptom I experienced was when I was sleeping.  I felt like I was running a marathon, but I wasn't.  I didn't have an understanding of what was going on, and I didn't know what to think . . . except I knew I wasn’t crazy.   Deep down, I knew it was related to calcium, but I couldn't prove it at the time. 

Sometimes, I would have seizures with normal calcium levels.  I was told my seizures were related to trauma I had in my life.  I argued against it, but felt it was a lost cause arguing with the doctor.  I was given the same diagnosis by another well known doctor in Minnesota.  After this, whenever a new doctor read the report, they had no time for me and the quality of my care went downhill.

I have been turned away from ER labs to get treatment for low calcium.  I've been told my high calcium was the flu and they would not address the calcium level.  I've been left alone in ER rooms for over 45 minutes without anyone checking on me.  One night I started to have tetany, and I shouted and continued to shout until a nurse came to check on me.  She said I was hyperventilating, but I insisted it was my calcium.  She brought in a doctor, but by this time I could barely talk because of tetany.  I argued to have my calcium tested, and sure enough it was low.

After a seizure at work, I decided to go to my doctor instead of ER.  All he did was ask if I was depressed, and didn't bother to check my labs.  He had a conversation with my endocrinologist, saying I didn't know enough about my HPTH.

In March of 2006, I had a terrible muscle spasm in my right knee at work.  It did a 90 degree turn.  I screamed, but because I was in the bathroom, no one heard me.  I went to an orthopedic doctor.  He did some lab work, but didn't have a clue what caused the spasm.  Months later, I learned that I was severely low on vitamin-D.  On the chart, it was 8, and it was supposed to be 22. 

I went to our first annual HPTH Conference in April of 2006.  It was an amazing time.  I met Doctor Karen Winer from the National Institutes of Health.  I had heard of her, but wanted to meet her in person.  She agreed to put me in her study.  In November of 2006, I went to NIH for the first time.  I learned I was severely low on vitamin-D and D3.  In all my 34 years, I had never been tested for vitamin-D3.  Once she put me on D3 the seizures, hallucinations, visions, or double visions stopped!  I also learned I had calcifications on the brain.  Through my persistence, I had managed to avoid kidney failure.  Overall, I have gone through about 16 doctors before I found effective treatment.

On October 31, 2007, I started my new treatment of HPTH injection 1-34.  I take injections 3 times daily.  Although it won't reverse the damage done to my bones, it will prevent my bones from getting denser in my later years.  Through this study, I have learned two causes for my calcium drops.  One is my menstrual period.  My calcium will remain normal until I get my period, and then it will dramatically drop to 7.3 or 6.9.  Diarrhea is another cause.  What is amazing about the 1-34 injection is my fast recovery time. 

I will remain on this treatment as long as I'm allowed to continue.  I will never go back to conventional treatment.  I will forever have to go out to NIH every six months or until it is approved by FDA.  The staff is truly remarkable.  They have taught me two things to test myself to see if my calcium is low; to tap on my cheeks, or use a blood pressure cuff.  Doctor Karen Winer has dedicated her life to this disease.  She has changed and improved the quality of life for many patients.  Although I have leg issues I still can't fix, I am much more energetic. 

The sad part of this story is most of this was due to neglect of doctors. Or lack of knowledge on the doctors part.  Not to mention all the horrible seizure medicine I had to take. That was an experience in itself.  This is the nice version of a very not so nice experience.  I'd say an overview of my life experience.

Written By: Bridgett Garrity Board Of Directors Hypoparathyroidism

Edited By:  Gayle Garrity (my mom)

Final Editing James Sanders President Of Hypoparathyroidism Association

That pretty much says it all.

Please help me honor Doctor Karen Winers hard work.

In picture

Bridgett(myself), Marylnn research nurse, Doctor Collins, Doctor Karen Winer on the right.

Bridgett