Download The Bloody Truth Street Smarts - Hemophilia Foundation of Michigan

By Phil Smith
My goal when I went onto the U of M campus was to test
By Mike Peters
people’s basic knowledge of hemophilia and von willebrands.
In 30 minutes, I got to talk to three students.
I went out on the street of U
The first person I talked to was Georgina Mae, a of M and asked people some
second year student studying engineering. She had heard of questions on von Willebrand and
hemophilia, but not VWD. I
hemophilia and what
asked her what was wrong
surprised me was that
with hemophiliacs, and she
some of the people I
replied that it was a lack of
asked the questions to
platelets, as opposed to what it
Two MYLIFErs decided to go out on got some of them right.
really is, a factor deficiency.
The first question I asked was
the campus of the University of
Next was Brad Beckerson, a
what
does
V.W.D means. One guy replied
Michigan to find out what the general
freshman at U of M studying political
“Volkswagon Debut” and that was wrong,
population knows about bleeding
science and French. Again he knew what
but it was alright. The second question I
diesorders. It was a cold day, but
hemophilia was but not V.W.D. He told
asked was to a lady. The question was,
both guys got people to stop and
me hemophiliacs bleed easier because of
“Is hemophilia a dance?” and she said “It
answer their questions. Here’s what
their genetics, which was half right. Brad
is not a dance, it is a bleeding disorder,”
they found out!
knew that hemophilia wasn’t contagious,
and she was correct. The next question I
but he believed hemophiliacs bleed easier, when they don’t necessarily
asked was, “Is V.W.D a restaurant?” and the lady and
bleed easier, just longer, and it is more serious when they do.
gentlemen said, “No it was not a restaurant,” and they were
Last was Paul Brown, a freshman studying dentistry. He knew correct as well. The fourth question was “If someone said
what hemophilia was, still no V.W.D. though. Paul knew that hemos bleed you were a hemo what does that mean?” The lady replied,
longer, as opposed to easier, and that it is because of their genetic
“It means that you’re not heterosexual.” She was WAY off,
inabilities that they take longer to form a clot. All this he knew easily but but I had to laugh it off. The final question I asked my last
he still thought that it was due to a lack of platelets.
person was “How do you spell hemophilia?” and the
Overall, the average person knows some of the basic stuff about gentlemen and lady got it correct. I have to give it to the
hemophilia. Von Willebrands however, needs to get a better name, I
people that I questioned on hemophilia and von Willebrand
suppose. Not a single person I talked to had even heard of it, much less they a little about the bleeding disorder, but not a lot.
been aware of the conditions of the disease.
Street Smarts
Hemophilia Foundation of Michigan
1921 W. Michigan Ave.
Ypsilanti, MI 48197
www.hfmich.org
The Bloody Truth
An HFM Publication for Teens by Teens
Spring 2005
Non-Profit Org.
U.S. Postage
PAID
Ypsilanti, MI
Permit No. 970
MYLIFE 2005:
(Back L-R)Kevin Seyfried, Mike Peters, Nick Gamber, Jim Munn, RN
(Front L-R)Adam Wilmers, Caroline North, Michelle Finnerty, Phil Smith, Angela Lattas
MYLIFE Back in Action for Great Teen Programs!
On April 1,2 and 3rd, HFM’s MYLIFE (Michigan Youth: Leadership Initiative for Education) met at
the Emrich Retreat and Conference Center in Brighton. During the weekend they put together this
newsletter full of articles they thought you would find interesting, plus some games and puzzles and
even a contest. Cut out the coupon below, answer the questions after reading this installment of the
Bloody Truth, and mail it back to HFM before June 1st to be entered in a drawing for gift certificates
for food, movies, clothes or books!
1.
What is the third myth in “Myths About Hemophilia?
___________________________________
2.
State three symtoms of a drug overdose.
1._____________________
2._____________________
3._____________________
3.
What did the man say when Mike Peters
asked him “What does VWD mean?”
___________________________________
Return this coupon to HFM, 1921 W. Michigan Ave., Ypsilanti, MI 48197 by June 1 to be entered in the drawing!
Myths Ahout Hemophilia
By Kevin Seyfried
There are many myths about hemophilia. The third myth is that women cannot
have hemophilia. It is extremely rare
Some may be obvious, others not so.
That’s why I am here to clean things up. but women can get hemophilia. If her
mother is a carrier and her father has
The first myth is that people with hemo- hemophilia she would inherit the gene
for it.
philia do not play sports. Hemophiliacs
can play any sports they would
like to play. Some like The last myth I would like to clear up is
there is no cure for hemophilia. So far
football, rugby and
hockey are not highly scientists searching for a cure believe,
recommended because theoretically, that gene therapy could
cure hemophilia. Your genes help
of the high physical
develop hemophilia, so they could
contact. Others like
soccer, basketball, swimming, volleyball stimulate your genes to cure your
and track are great ways for hemophiliacs specific disease.
to exercise and have fun. As long as you
know your limits you can play what you There are many more myths to be
researched. Most of you could figure
want without any worries.
out pretty quickly if they are
fact or fiction. You will hear
The second myth is that asprin will
many
myths throughout your
not effect your clotting time.
life; believe them if you want,
Asprin is made to thin the blood
but the best and most honest
and it reduces the ability for blood
answers
come from research
to clot. Hemophiliacs should
of your own. Don’t be afraid
never take asprin to relieve pain
or headaches. It could cause a bleed to to speak out against the crowd.
accur in over worked or target joints.
Talk to your HTC before taking any pain
relievers.
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C N F G C X H V F K E L S I N
V S A L A A J D B R L T P U I
Z O Q A I R I U D J G O R D S
O H N Q N A S J U X A S I F H
E F G W D L Z E H R E R N C R
G T U N I O Y T T Z D U G F N
N A A O H L C A I S L L F Q K
I B B E A I L I H P O M E H R
R S U J R I O E T V B P S O O
Y L F R E T T U B A P L T V T
S N N Y O N E Y U R M C O U C
D B Y B T D G R X C A O V O O
U Z R I Y N Z W O F C N L D D
U S P K C S W Y U Z F S D O U
Y L S I L Y O F V N O E G V J
BANDAID
BLOOD
BUTTERFLY
CAMPBOLDEAGLE
CIT
CLOT
DOCTOR
FACTOR
HEMOPHILIA
HTC
NURSE
OUTPOST
RETREAT
SPRINGFEST
SYRINGE
VONWILLEBRAND
Some Basic Things To Know About Sex
By Angela Lattas
Being a teen, sex is something I hear and see daily. With television, school, and all the different types of
music out there today, sex is definitely a hot subject. I personally believe kids should know the options and the
risk they could take. Many kids today think it makes you “cool” to be doing it, when really it makes you a fool
unless you know the facts. You can get pregnant the first time you have sex, or get an STD (Sexually
Transmitted Disease) without even knowing it.
Here are some options to protect yourself. Girls can take “the pill” to prevent pregnancy, but that does
not protect you from STD’s Condoms can be used to prevent pregnancy and STD’s, or you can make the best
decision and stay abstinent. All of those options can help you, but you should play it smart and stay abstinent.
Now as I said, there are STD’s you can get. Some you may have heard of, like HIV/AIDS or hepatitis,
but there are so many more. Some you can’t even tell you have or others that will never go away. Any STD can
change your life, some will effect you forever and make you very ill, and just remember you can get one your first
time if the other person has been sexually active before.
So be smart, don’t be shy. Ask questions and get some answers before it’s too late. Don’t ruin your life
by doing something that can wait. Don’t risk it unless you are being safe, and even then remember there is
always a chance some thing can happen even with the pill and a condom. Be smart; don’t do something you’ll
regret just to be cool.
Due to the great pain that hemophiliacs suffer
many of them turn to pain killers to help reduce their
suffering. However, this leads to a large problem
among many hemophiliacs who then become
dependant on pain killers. It is very easy for many
hemophiliacs to justify their addiction because of the
pain they suffer. However, it is very
important for teenagers to recognize the
symptoms and be aware that drug
addiction can happen to anyone.
Most hemophiliacs will use
painkillers when they have serious or
debilitating pain. When used properly
and managed correctly, painkillers can
be a real asset to many hemophiliacs
with chronic pain. However, when a
person begins to lose control of
themselves to obtain the drug and when
they focus primarily on using and
obtaining the drug, this is when a person
has become addicted. Many
prescription painkillers activate very
important parts of the brain, like parts
that tell your body what it likes and doesn’t, and that
is why they are so addictive.
All addicts will face physical dependency as
well. Physical dependency is when the body suffers
withdrawal symptoms after a long period without the
drug use. Some withdrawal symptoms for painkillers
would include: watery eyes, runny nose, yawning, loss
of appetite, tremors, panic, chills, sweating, nausea,
muscle cramps and trouble sleeping. There is an increase
in blood pressure, pulse rate, quicker breathing, and
high temperature as withdrawal progresses.
A leading cause of addiction amongst
hemophiliacs is the need for a higher
dosage after every use. This becomes a
serious problem for hemophiliacs who
after using painkillers several times can no
longer get the pain relief the once had
causing them to use more of the drug.
This need for more and more of the drug
can sometimes lead someone to overdose.
An overdose is when the body cannot
handle the amount of drug that a person
has put into their body. Symptoms of an
overdose could include: vomiting,
accelerated heart rate, and coma.
Hemophiliacs suffer a great deal of pain
in their lives and it is no wonder that they
subsequently turn to painkillers to relieve
their pain. While these painkillers can be
very beneficial to people and allow them to live seminormal lives, they still do have inherent risks. As
teenagers we must understand these risks and weigh
the benefits of the painkillers against the risks. Addiction
can happen to anyone and understanding this is a great
step forward in preventing addiction.
Drug
Addiction
Among
Hemophiliacs
By Nick
Gamber
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Fighting To Find A Cure
By Michelle Finnerty and Caroline North
Experts say that Hemophilia could be cured in the future as long as they keep
working with gene therapy to figure out a way to replace or repair the defective gene. As
of now they are thinking that if they could transfer a corrected gene to a patient in time
the patient’s body would be able to produce the missing factor on its own. Pleuripotent
stem cells would be perfect for the transfer of the human genes to make this change.
Just recently gene therapy for hemophilia has taken the next step, in which they are now
taking human trials. There are ways that people with hemophilia can volunteer in clinical
trials. This would help with studies and would also benefit the volunteer
because they can try new treatments before they are available to the
public.
Another new study is that they are now working to evaluate
genetic and immunological bases for inhibitor development. They
are now working on finding replacement factors so that the
inhibitor won’t develop.