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Below are the stories of individuals whose lives have been changed by FM. As you will read, FM affects everyone differently, having a
knowledgeable physician is essential to receiving a proper diagnosis and treatment for FM. If our physicians are unaware of FM, and many are,
then unnecessary surgeries and other life-threatening procedures will be the result.
My mission is to not only inform the general public about FM but, also inform and educate the medical community so that FM patients may
receive the best care possible.
knowledgeable physician is essential to receiving a proper diagnosis and treatment for FM. If our physicians are unaware of FM, and many are,
then unnecessary surgeries and other life-threatening procedures will be the result.
My mission is to not only inform the general public about FM but, also inform and educate the medical community so that FM patients may
receive the best care possible.
LIVING WITH A RARE DISEASE AND UNKNOWN DISEASE:
HOLLY:
Diagnosed in April 2004,I was 27 yrs old.
numbness in left arm and hand. I had an ultrasound done a few weeks later, docs found three
bloodclots, two in arm and one in the internal jugular vein in my neck....
Diagnosed in April 2004,I was 27 yrs old.
numbness in left arm and hand. I had an ultrasound done a few weeks later, docs found three
bloodclots, two in arm and one in the internal jugular vein in my neck....
JOHN:
I was diagnosed in early 2000. My Doctors think I was exposed as far back as 1998, when
reviewing some old chest X-Rays.
Back in 1998 & 1999, it appeared that I had chronic Bronchitis. I thought it was unusual. I always
took good care of myself, never smoked, and was a local High School Track star back in the mid &
late 80's. My ignorant Family Doctor didn't even have the sense to refer me to a specialist. The
antibiotics were a quick fix at that stage, I was also a single father, and I couldn't really afford to
miss much work back then....
I was diagnosed in early 2000. My Doctors think I was exposed as far back as 1998, when
reviewing some old chest X-Rays.
Back in 1998 & 1999, it appeared that I had chronic Bronchitis. I thought it was unusual. I always
took good care of myself, never smoked, and was a local High School Track star back in the mid &
late 80's. My ignorant Family Doctor didn't even have the sense to refer me to a specialist. The
antibiotics were a quick fix at that stage, I was also a single father, and I couldn't really afford to
miss much work back then....
HEATHER:
I was diagnosed with Fibrosing Mediastinitis in June 2001 at the ripe old age of 27.
Area of compression: Superior Vena Cava (98%)
Other diagnoses unrelated to FM:
hypothyroid - 2001
How it all began:
In approximately August of 2000 I started having days where I would feel "full"...you know those
days (at least you girls do) where you feel bloated, full and just plain fat? It wasn't everyday, but as
time progressed, my "full" days became more and more frequent and with time, the feeling of
"fullness" became a feeling of pressure - pressure in my chest, pressure in my head and neck. By
November and December I would wake up with puffy eyes and swollen upper extremities. I had a
few odd bouts of dizziness - the room would just spin and the floor would drop out from beneath
me.
Things got worse...
I was diagnosed with Fibrosing Mediastinitis in June 2001 at the ripe old age of 27.
Area of compression: Superior Vena Cava (98%)
Other diagnoses unrelated to FM:
hypothyroid - 2001
How it all began:
In approximately August of 2000 I started having days where I would feel "full"...you know those
days (at least you girls do) where you feel bloated, full and just plain fat? It wasn't everyday, but as
time progressed, my "full" days became more and more frequent and with time, the feeling of
"fullness" became a feeling of pressure - pressure in my chest, pressure in my head and neck. By
November and December I would wake up with puffy eyes and swollen upper extremities. I had a
few odd bouts of dizziness - the room would just spin and the floor would drop out from beneath
me.
Things got worse...
THE FM FOUNDATION
PENNY:
November 2005, I had what I thought was a really bad
cold/bronchitis. I had broken my ankle in October (on the golf course
to say the least) and was in a cast/crutches; the holidays were upon us
and I had just changed jobs at the bank where I work and did not have
time to worry with what I thought was a bad cold. Lingering coughs had
been the norm for me all my life so I didn't worry too much about it.
To be honest, I just didn't have time or was able to break lose to go
to the doctor...
November 2005, I had what I thought was a really bad
cold/bronchitis. I had broken my ankle in October (on the golf course
to say the least) and was in a cast/crutches; the holidays were upon us
and I had just changed jobs at the bank where I work and did not have
time to worry with what I thought was a bad cold. Lingering coughs had
been the norm for me all my life so I didn't worry too much about it.
To be honest, I just didn't have time or was able to break lose to go
to the doctor...
REBECCA:
I will never forget the day that this all started back in 2002, I was 27 years old. I had been home
sick from work with a cough that would not go away. Apparently I wasn't feeling too bad because I
was laying out enjoying the beautiful day My doctor called and said that my ct scan had shown a
mass on my lung...
UPDATED: AUGUST 20, 2007
I will never forget the day that this all started back in 2002, I was 27 years old. I had been home
sick from work with a cough that would not go away. Apparently I wasn't feeling too bad because I
was laying out enjoying the beautiful day My doctor called and said that my ct scan had shown a
mass on my lung...
UPDATED: AUGUST 20, 2007
MARY:
My name is Mary Lawson and I live in Maryville, TN. I have had this disease
since 1978 when I moved to Ashland Ohio, I really didn't have any problems
until I moved to TN.That is when it started to grow...
My name is Mary Lawson and I live in Maryville, TN. I have had this disease
since 1978 when I moved to Ashland Ohio, I really didn't have any problems
until I moved to TN.That is when it started to grow...
TRICIA:
My name is Tricia Edgell (Lewandowsky) and I was diagnosed with
Fibrosing Mediastinitis in October of 2004 and have the form that develops
from Histoplasmosis. I was 32 years old when I was diagnosed and have
lived in Michigan my entire life. I'll never know how or when I contracted
histoplasmosis and I've come to realize that it's not really important
anyway...
My name is Tricia Edgell (Lewandowsky) and I was diagnosed with
Fibrosing Mediastinitis in October of 2004 and have the form that develops
from Histoplasmosis. I was 32 years old when I was diagnosed and have
lived in Michigan my entire life. I'll never know how or when I contracted
histoplasmosis and I've come to realize that it's not really important
anyway...
JASON:
I started having a constant cough around 2001, but just thought it was a smokers cough so
didn’t think much of it. My story really starts at the end of February in 2006. I was working as
an Assistant Manager at a 7-Eleven in Orlando, Florida and it was a delivery night. (I worked
the night shift 10pm to 6am) I was working at a fast pace so we could have everything done
on time for the next shift. I was carrying a heavy box of drinks to the cooler and once inside I
started to cough violently and started to feel nauseous, so I ran to the bathroom and started
vomiting up blood....
I started having a constant cough around 2001, but just thought it was a smokers cough so
didn’t think much of it. My story really starts at the end of February in 2006. I was working as
an Assistant Manager at a 7-Eleven in Orlando, Florida and it was a delivery night. (I worked
the night shift 10pm to 6am) I was working at a fast pace so we could have everything done
on time for the next shift. I was carrying a heavy box of drinks to the cooler and once inside I
started to cough violently and started to feel nauseous, so I ran to the bathroom and started
vomiting up blood....
TAMI JO:
Over the Labor Day weekend 1999, I went to the ER to be evaluated for some chest pain and a cough I’d been
having. Chest x-rays, blood gases, and blood work turned up nothing, but the doctor taking care of me that
day, Dr. Michael Bain was insistent that my symptoms were not normal. He ordered a lung scan which
showed complete occlusion of my left pulmonary artery; that is, I was getting no blood flow to my left lung. I
thought I had a pulmonary embolism, but I was told that the cause of my obstruction was, most likely, a
mass, but it would be impossible to biopsy due to the location. The mass seemed to have been pressing
against the artery and had caused a blood clot to form inside the vessel. A needle biopsy would certainly
result in severe bleeding. I was hospitalized and placed on blood thinners. Next...
Over the Labor Day weekend 1999, I went to the ER to be evaluated for some chest pain and a cough I’d been
having. Chest x-rays, blood gases, and blood work turned up nothing, but the doctor taking care of me that
day, Dr. Michael Bain was insistent that my symptoms were not normal. He ordered a lung scan which
showed complete occlusion of my left pulmonary artery; that is, I was getting no blood flow to my left lung. I
thought I had a pulmonary embolism, but I was told that the cause of my obstruction was, most likely, a
mass, but it would be impossible to biopsy due to the location. The mass seemed to have been pressing
against the artery and had caused a blood clot to form inside the vessel. A needle biopsy would certainly
result in severe bleeding. I was hospitalized and placed on blood thinners. Next...
GAILENE:
My name is Gailene Jaques. I am 40 years old and live in Dallas, Texas. After 4
years and 7 specialists, I was diagnosed with FM in 1998. By that time, my face
looked like a moon, my fingers like sausages, my entire upper torso bloated and my
stomach looked like a road map. I could not walk very far and climbing stairs was
excrutiating. The doctors took a chance and were able to shove a stent through my
superior vena cava cracking through the cement in my chest. The relief was
incredible...
My name is Gailene Jaques. I am 40 years old and live in Dallas, Texas. After 4
years and 7 specialists, I was diagnosed with FM in 1998. By that time, my face
looked like a moon, my fingers like sausages, my entire upper torso bloated and my
stomach looked like a road map. I could not walk very far and climbing stairs was
excrutiating. The doctors took a chance and were able to shove a stent through my
superior vena cava cracking through the cement in my chest. The relief was
incredible...
ASHLEY:
My name is Ashley Erwin I am 27 years old. I am married, I have two beautiful
daughters. Taylor who is 9 yr.old and Emily who is 4 yr. old. I was diagnosed
with FM in June of 2006. The doctors have no idea when I actually started
having this disease. My mother has told me stories. When I was little up until
now I have always had a cough. When she would take me to the doctors they
would always tell her I had bronchitis and they would put me on antibiotics. But
not until April 4th,2006, I went to my family doctor and they told me that I might
have asthma, the gave me a chest x-ray an,because we pushed the issue. On
April 7th 2006 the called and told me to come in that I had a spot on my right
lung. They didn't know what it was...
My name is Ashley Erwin I am 27 years old. I am married, I have two beautiful
daughters. Taylor who is 9 yr.old and Emily who is 4 yr. old. I was diagnosed
with FM in June of 2006. The doctors have no idea when I actually started
having this disease. My mother has told me stories. When I was little up until
now I have always had a cough. When she would take me to the doctors they
would always tell her I had bronchitis and they would put me on antibiotics. But
not until April 4th,2006, I went to my family doctor and they told me that I might
have asthma, the gave me a chest x-ray an,because we pushed the issue. On
April 7th 2006 the called and told me to come in that I had a spot on my right
lung. They didn't know what it was...
EMILY:
My name is Emily Olson Williams and I was diagnosed with
Histoplasmosis related Fibrosing Mediastinitis in June 2008. I am 27
years old and, for the last 6 or 7 years, had been feeling more and more
short of breath…something that I decided was probably due to my
gradually becoming more out of shape, which my family thought was crazy
because I’ve always been relatively active. For the past 2 years I have been
getting sick every December and dealing with an ongoing cough until about
March, sometimes later. I also am randomly afflicted with pleuritic chest
pain…something that one doctor, 4 years ago, said was a pulled muscle...
My name is Emily Olson Williams and I was diagnosed with
Histoplasmosis related Fibrosing Mediastinitis in June 2008. I am 27
years old and, for the last 6 or 7 years, had been feeling more and more
short of breath…something that I decided was probably due to my
gradually becoming more out of shape, which my family thought was crazy
because I’ve always been relatively active. For the past 2 years I have been
getting sick every December and dealing with an ongoing cough until about
March, sometimes later. I also am randomly afflicted with pleuritic chest
pain…something that one doctor, 4 years ago, said was a pulled muscle...
