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Living with Epidermolysis
Bullosa
Introduction
Welcome to my Home Page!
Let me introduce myself, I'm Bruce, 34 year of age, 5'4, weighing about
104 lbs. I live in Elwood, Indiana with my parents but soon I will be
moving to where my home is being built now by Habitat in Tipton, Indiana,
about 10 miles from my parents, and it's 50 minutes north of Indianapolis.
I'm one of the rare adults who has a disease called "Recessive Dystrophic
Epidermolysis Bullosa" "RDEB" for short. Basically EB is
disease that were born with, that we didn't get my second layer of skin.
I was born December 2, 1966, two months premature, and I have a twin sister
"who is EB Free" I'm older by 5 minutes "grin". I
also have two older brothers that were fine.
Diagnosis
Doctors didn't know what
was wrong with me at first, just knowing that I was shedding my skin.
Also, at the same time, my parent and doctors didn't know my mom was going
to have "Twins", so it became a big surprise to say the least.
I was born in Elwood, Indiana and spent the first month in the Elwood
Hospital, then was transferred to Marion Hospital for another month before
going home. While in the Marion Hospital, a lady pediatrician doctor took
one looked at me, and had diagnosed me with "EB". She had seen
one case in Harvard Medical School. Pretty much when I was born, the only
thing that wasn't wrapped on me was my head and bottom.
Childhood
Parents said I looked
like mummy being all wrapped up from head to toe. The doctor taught my
mom how to learn to take care of me while I was there before going home.
I didn't walk until I was four years old, and from what my dad said, it
was on a Sunday morning, dad was reading the Sunday paper, and looked
up and saw I was walking holding on to furniture. Dad called mom into
the room, but she wanted to run over before I fell and hurt myself. But
dad said to leave him alone, that I was doing fine. It's like I was burn
in a house fire but that's not true.
What
is EB?
It's not contagious in
anyway. Our skin breaks down anywhere on our bodies that form blisters
that range in any sizes from tiny to very large size blisters. It's very
important to break them before getting any bigger, because the size of
the blister will be the size of a new sore than will develop soon after
break blister. There are 20 different forms of EB, ranging from mild,
severe, to fatal. I have a severe form of "RDEB", that I'm pretty
much wrapped from the arms, thighs, legs, knees, and my feet. It's a daily
routine to check for any signs of new blisters forming, or change areas
that need to be change depending on how bad the area maybe or the way
I'm feeling.
Growing
up with EB - Infant
When growing up mom had
let me do it myself, and let me go at my own pace. I would usually take
a bath and soak my dressings off. But there were a lot of times I would
stick to my clothes or a dry dressing was stuck to a bad open area that
wouldn't come off unless it was soaked first, but even that wasn't enough
either. My mom learned to make my dressing for me when I was very little.
A pharmacist had told her how to make them, because dressing were very
expensive back then, and I might add are still today. Mom usually worked
just to help pay for my medical supplies. As a child growing up with EB
was very different than a normal child. I pretty much didn't have a child
hood due to EB. Mom always told be when growing up that "God Made
Me This Way", and I believed her because I was different than most
children. I knew something was wrong with me, but I as a child I didn't
understand it because I was to young. I was acting like an adult but in
a child's body growing up. I pretty much knew what I could do and not.
Parents
and Friends
My parents were to overly
protective of me. They never said "no" or "you can't do
that". and I'm glad they let me do the things I thought I was able
to do, and I did... Attending school growing up was a good experience
for me. All the teachers were very nice, and understanding to my situation.
They allowed be to leave class five minutes before everyone else left
to go to their next class or to eat lunch early to, so I wouldn't get
hurt or bumped in the hallways at school. The kids were understanding
to me, and I remember playing kick ball, and so one would kick for me
while I got in position to run the base.
Schooling
There were my times at
was bumped into by kids not paying attention or it was accident get my
knees or arms skinned up a few times by kids. I would go to nurses office,
and tell them what to do for me. I had always had supplies there for myself
just in case of accidents like would happen and to be prepared. But as
always the nurses would call my parents to report I was hurt, and ask
what to do. They would say, "what did Bruce tell you", then
listen to what he is saying because I knew what needed to be done... Having
EB, you are faced with having hand surgeries at some point.
Early
days of RDEB
For me it started when
I was five or years old, my fingers became webbed together. So, my home
away from home each summer was spent in the hospital almost every summer.
I have had about over 25 some surgeries in my 33 years growing up with
EB... In the late 70's early 80's, I was having a difficult eating or
swallowing. EB also cause blisters to form in my throat to the point of
getting food caught, and it wouldn't go down or in a lot of cases not
even come up either. I always had to force it down or if not, then I had
no choice to bring it back up which I hated very much. It always took
it's toll on me physically of having trouble eating. I was so bad, they
put me in the hospital at one point when I was 12 or 13 years of age.
Early
treatments
The doctors were going
to do surgery, put decided not to because the book advised them they could
cause more harm than good. So, they sent me home, told my parent to put
my head of my bed on blocks, and started taking dilentin for awhile. Usually
it's seizure patient, but doctors said they found that Dilentin controlled
blistering in some EB patients, so needless to say I did. But after several
years of it, I didn't see any improves on taking it. But putting my bed
up on blocks did seems to help for a while I believe. I still had my swallowing
problems through the years, and now and then I still do...
Growing
up with RDEB - Youth
As growing up, it didn't
bother me much being out in public. I felt like I had that right to get
out, and go place with my parents. I would go to the mall or anywhere
for that matter, and as always I would get kids looking at at me and staring.
I would know when they are, and sure enough they would go to moms to say
something about "look at him". If they stared long enough at
me, then I return the favor by staring at them...
Higher
Schooling
Now in middle school
and high school was a good experience for me. More class and longer days
made it difficult for me and wore me out, so they suggested me having
can of pop or something to help me make it through the day, and it did
help. In high school was ok for me. I had some friends but not many. I
one kid who didn't like me, and every time I go near him or anything he
would give a dirty look. I was able to talk to my fellow students about
my disease, and made several speeches to health classes, and human relations
classes. That's where I think it made the different for me, and they realized
what was wrong with me, and I gain respect from them because of my situation..As
far as dating, I didn't in fact. Sure I had crushes but no one was really
interested in me... The great thrill for me was that I made to 18 years
of age, and graduated from high school. I didn't drive in high school,
and wasn't ready until I was 21.
Driving
& Independence - The dreaded exam!!
I went through Crossroad
Rehabilitation Center to learning how to drive, paid by Vocation Rehabilitation
out of Kokomo, Indiana. My dad wasn't the type to teach me, and I know
that because of what my older brothers went through and my twin sister.
I took my driver's lessons in Indianapolis, and actually I was born comfortable
with that since I did know Indy pretty well. I drove down town Indianapolis
on my first day, then on my second day I drove on the interstate passing
a emi going 70 mph. By the time my 12 or 13 lesson, they told me I was
ready to take my test and I passed, I remember the day very well. Friday,
July 7, 1988 that was the biggest day of my life of independence. My dad
didn't think I was capable of driving but I showed everyone. I have a
few modifications to my car. One is a five inch mirror across, so I can
see all the way around the car without turning my head side to side. The
I have a handle on the steering wheel to get a better grip of when I turn
to handle the car better, and then just a key hold to help start the car,
makes it a lot easier for me without blistering a lot...
Employment
I currently work full
time as Adm. Aide for non-profit Agency - Janus Developmental Services,
Inc. I have been employed the over 9 years, doing a variety of office
duties. I mainly type annual report on clients in a data information system
where we keep on the client information in. Also, we have a First Steps
program where we serve children from newborn to 9 years of age with developmental
delays in their fine / gross motor skills, and speech / language skills.
We have 4 coordinators who I get work from, to type letters to parents,
doctors, case conference notice and so on. I also a backup to the receptionist
when she goes to lunch, vacation or sick. So I keep extremely busy, but
more so this past summer and hasn't let up any either. The benefits are
real good for vacation, and then having medical insurance is a blessing...
Update 5/1/2001
Well, since I last wrote
or updated my website, lots have changed at least in my working full time.
I been battling infections & blood transfusions due to blood count being
low, meaning my red blood cells. Since my last blood transfusion back
on early Aug. of 2000 was my last 3 units and took me two weeks to even
bounce back, then another two weeks later, I woke up to that familiar
feeling in my neck on the right side. Another infection was setting in.
This time, I knew a needed a medical leave from work as I was very tired
and going on another round of Vacomycine IV Antibiotics. This last two
months, and I was sleeping 10-11 hours a night, not to mention I'll get
up, get dressrd, do dressing changes, eat, and within 2 or 3 hours I am
ready for a nap. So, I needed to decide whether to continue working full
time, or finally decide to retire to disability. I had to weigh my options,
ask my support group and extented family for advice, as well talking to
Lorraine Cameron who is a wonderful person to talk to, and go through
the options that were best for me. Ater talking to my extented family
members, and all, I decided to retire to disability, but then later decided
to still work part time (24 hours per week), just to keep busy, and my
employer allows me to come in at a later time, so I'm not getting up so
early in the morning. I was able to set my hours from: Monday through
Thursday 11-4; Friday from 11-3. I can still get all my disability without
over the limit of what you can earn per month to keep going. By setting
those hours, I'm able to get 10-11 hours a night, and not have to push
or over do it. Not to mention, my work load isn't so heavy either, as
well I'm not the back-up to the receptionist anymore when she goes on
vacation, sick, or during lunch. Only as an emergency back-up only, which
is very nice & easier on me personally so I'm ale to get my work done
without the pressure. Plus if I become sick like having a cold, or my
blood count get low, I'm able to call in sick and not worry about income.
I have already had several days where I just don't have any energy at
all, and need a couple of days to take care of me and just had a sinus
cold that put me down for a week, and was able to take care myself and
not go in for 4 days. I would'nt have been able to do that if I was full
time. The drawback to part time, having to pay for my medical insurance,
so I set it up to get my retirement money monthly, until my medicare insurance
kicks in the year of April 2003, which will help a great deal, but Ican't
live without my insurance, since being so ill more so now in the last
3 years with having RDEB. I'm just glad to be able to take care of myself,
and keep going. I have learned to not push it anymore, and to take a different
look to adjust to a different type of schedule than I was used to. I can
say this was the best possible thing for me, and the right decision for
me at this time. I have considered going on disability about 18 months
I applied in Nov. 2000 before. But I wanted to see if my blood count,
along with the infection, blood transfusions were a short term or going
to be long term. Hard to say, everyone is different with EB, and since
having cancer, the truma I have gone through has taken it toll on me emotionally
& physically draining on me. Now, I'm not under so much stress, and this
was the best for me personally and my health. I don't feel like I was
giving up, I have been working 14 years now, 10 of it which was full time,
but I didn't have the problem of sores not healing in a good leangth of
time, infection, blood transfusions, and the very low energy like I do
now. I was tired before, but not to this extent. I felt it was time, I
put my well deserved dues in my career, and now it needs to be second
as my health come first.
I would recommend any RDEBers to work, if not full time only if you think
you can handle it, but even part-time if need be. You will not know until
you try, but don't over do it or push yourself over the limit and stress
come with working. Better to take care of you first, and go slowly in
working and what you handle. Remember: Always go for your dream & goals
and what you want to do in life, your life is now, live it to the fullest
and what makes you happy! Any thing is possible in life if you set your
mind to your goals & dreams :O)!
EB
and the last 3 years - 1997 / 2000
Murphy's
Law - Whatever can go wrong.. most probably will!
These past 3 years has
been real difficult for me. I had a sore on the right ankle that didn't
heal. But I couldn't understand why, and it was deep. So I went to family
doctor on September 30, 1997 and was put on oral antibiotic Cipro, and
then had tried the liquid antibiotic for while also. But nothing seems
to help. I had this sore a year and half, bit knowing it could be something
worse. I was then seeing different dermatologist for my ulcer. A week
before December 14, 1998, I was really feeling ill. My neck had started
to form an infection, because it felt like a stiff neck. So I saw my family
doctor, and she admitted me in the hospital. I was feeling run down, and
no energy at all. Come to find out my blood count was 7.5, and I have
never been that low in my entire life. Normal would be 14-18, but if I
can stay around 9 or 10, that is functional for me to live with. If it
gets below 8.5, then I start getting headaches, and real tired where I
would sleep. Then I was treated for antibiotics for three days before
my insurance company said I didn't need to be in the hospital, but they
were wrong, and ended up back in several different times after that. I
was getting treatment by occupation / physical therapist on my right ankle.
It did get smaller but then it started getting bigger, then they noticed
a odor to it. Then I was getting to the point my internal infection wasn't
getting any better. So my family doctor transferred me to I.U. Medical
Center to see a infection disease doctor. So, I did get my infection cleared
up at that point, but then I got dermatologist involved about my unclear.
I saw several doctors, and looked, poked, and everything else. Then they
came back and said have I been told I had a risk for cancer, and I said
"no", nobody has ever told me. So they did a biopsy to determine
if it was cancer or not.
Cancer
Well the did come back
as cancer, but wasn't sure how deep it was. So they referred me to to
plastic surgeon, and when I went in to see him, he said this was serious,
and that he told me I could loose my leg. That their scared me, and I
was in there 90 minutes with him and his staff. So he recommended x-rays
and Open Sided MRI to determine how deep it was. All the test came back
negative, so that real good news, but the real test was having surgery
to determine how deep it really was. From the time I saw the plastic surgeon
and my surgery date, was the longest three weeks of my life. I had to
decide rather to go through radiation & Kemo therapy, or to loose
my legs. I had decide to loose my leg because nobody could tell me us
EBers could survive radiation & kemo therapy, because I'm not that
big, and don't weigh very much either. I knew it would be a battle, and
have heard that kemo therapy takes a lot of out a person, and already
having EB was enough in it's self. I figured to loose my leg because things
we can do can be adaptive to us, and had to accept being in a wheelchair
for the rest of my life if it came down to it. That was hard to decide,
and also emotionally. I ended up having surgery on February 22, 1999.
First surgery to determine how deep the unclear was, and they were a mm
away from getting it all from my born, and that the cancer hadn't gotten
their yet, but would have if I had to wait another couple of months. Then
I had a another surgery to put a muscle from my left side of my back to
replace the area of my right ankle, and then skin graphs on my left side
of my thigh. The doctors had to take a lot of the good of my leg &
ankle to get all of the ulcer. Then I did have four days of radiation
to make sure they did get all the cancer, and the results were good that
they did recover of the cancer. Spending five weeks, four days of radiation,
and three surgeries was the most I had ever gone through in my entire
life other than having hand surgeries...
Recovering
from Cancer
My ankle is doing fine
now, and no more cancer. Now I still get internal infections since having
cancer, and my body hasn't settle down yet. I have had two internal infection
since May. One in June that last six weeks, and I currently have one now
that I have had since Sept., and I have been on IV antibiotics since October.
It has been a rough time emotionally & physically to keep myself going
at work, and fighting through this infection. It takes more out of me
than I ever though it would, but having to use my inter strength to keeping
going. My doctor are at this point drawing straw at this point. I have
a MRI done, and shoed nothing serious, but did show two slip disk in my
neck, but aren't causing any problems at this point. Bit I wonder if the
two slip disk in my neck causing me not to get better. I'm getting some
better but hard to say because I'm to close to the situation...
EB
and isolation
Something I never would
ever happen, when I was ill was finding a support group here in Indiana.
Day after my first surgery, I was having to a procedure done, and radiatist
nurse came up to me and said she noticed my chart that I have EB. She
said she has a friend that works in the hospital, and she has a son who
has EB. She said she had started an EB support group here a couple of
years ago. I told the nurse that I have only met one other person with
EB and her name was Jill. Then the nurse "Jackie" called her
friend "Kathy" to let her know that she had a patient with EB
down here. She of course came right down and spoke to me for while. I
told her of what I have been through, and that I met only one other person,
and Kathy said she was part of the support group that she started. Sure
enough one week later, I had a visitor who I though I would met again.
Before I was ill, I had no contact with anybody else with EB. I worked
and lived in my own area, but knew I wasn't along with EB, but didn't
know where to look or find them until I became ill. I had a family friend
find lots of information on the computer, but I could have access because
of me being hospitalized when this all came about.
EB
Friends
Jill and I spent more
than hours talking, and I was really taken back by her coming to see me.
We met 10-12 years ago when I had gone through hand surgery but was in
the recovering part of my surgery when we met. But I could see she was
scared, and not to sure about having hand surgery. We didn't speak much,
and soon after lost contact with each other. I wished we had been in contact
but things happen for reason. Now that Jill & I reunited, has helped
me a great deal. Jill and Ken "her husband" back end of May
had offered me a computer they had an extra one, but wasn't using. Jill
had offered to the first time, but I turned it down because I was to sure
about it, because I could afford one because of my illness, and my doctor
bills coming in. Then she had offered it to me again, and I accepted this
time, but they would take anything for it. Jill had found some EB Homepages,
and she saw one her name was Christina from NV. Christina had told her
that there is a support group online now on egroups.com that had just
started up. Jill knew this was something I needed, and which was true.
I never though so much good could come out of something so bad that I
went through.
Supporting
friends
I'm very grateful to
Jill & Ken, and they haven given me something I never would have be
able to afford at this point in my life because of my illness. They have
changed my life in a way I couldn't imagine. Plus I was going through
a divorce at that time. The divorce was fine but still hard, but it was
the marriage part, and not getting the support I needed which I was doing
everything I could to keep it going & going through my illness, and
working at the same time. The stress was the big part, and emotionally
not know why I wasn't healing to it's toll on me emotional & physically.
I have learned a great deal more here these last three years, but having
a positive attitude my first 30 years has gotten me to through these last
three years, and the strength God has gave me to push forward in my life
despite how much I have taken on my shoulder these last three years...
EB
Life support group - egroups.com
This last part of my
Bio is a Tribute to the support we have on egroups.com Having EB has open
my life up, and seeing and hear other stories with other EBers, and parents
with children with EB. The support group is one of the best things that
came out of my illness, and to share my story with you all, so all of
you can be aware that it could happen to you. That's why we have to be
more aware of our situation and don't take nothing lightly when you feel
or see something that's not normal. The love of the support group is like
a family, and I'm proud to say your my family, and I appreciate it a lot
more than you can imagine and means a lot to mean. When I go to work,
or my family see me not feeling well, they don't understand because they
don't have EB, and don't realize what I go through except my parents.
But when I come home from work, and want to get away from the real world,
then it's support group where I feel more at home! I want to help other
with EB, and what I have learned in my 33 years of living my life. If
I help one, it's well worth it to me, but I realize everyone has a story,
and EB effects them differently than me and we are all not alike accept
having EB.
Helping
others with EB
I want to continue to
help in some way in the future when I get better, and hope maybe we can
help others like myself get help financially because the cost for medical
supplies & medical bills is way out of hand, and take a toll on us
EB families who are much worse in there situation. What works for one
will not always work for another, and I'm grateful & bless that I
have you all as my "extended family" Thank You....
Conclusion
In closing, I would say
to EB families, keep a positive attitude, and about life for your child
with EB. Anything is possible, only if you let your children are able
to do. I do hope in the future there is a cure someday but maybe not in
my life time, but hope & settle for relief for more than anything
with living with EB right now. I hope gene therapy is our answer here
in the next 10 years would be wonderful or anything to make life a little
more easier and enjoyable to continue to live on with EB.
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