Other contacts in
We found some
of our first contacts via
http://www.beckermusculardystrophy.org/
which held a database (which included my details ) of contacts worldwide, it
was a site with lots of information ,news and links based in the
Brads Stephenson the webmaster has
Becker muscular dystrophy and lives in San Antonio,
I decided to sort the list of contacts in Canada and the USA into order
by state which is the equivalent to Becker United list which is in order of
County, we were given permission to use
the data on our site both groups are committed to the Becker Community. The
names were taken from the 2004 -2006 Databases from http://www.beckermusculardystrophy.org/ . We work loosely with
the group but they have no connection with Becker United other than some of us
being listed as members of both groups. Some of
these Email addresses may not now be valid but we have provided the list to aid
the Becker Community in contacting each other.
In 2007
http://www.beckermusculardystrophy.org/ became http://beckermd.org
changing its format and the original database now no longer exists But by visiting their site you
can now become a member of their organization and be listed on their new
database.
Adding your name to this list
The data contained on this list is
not from Becker United we were allowed to use it many emails may now have
changed and may no longer function
1.
You may Add your
details or change your details on this page by emailing me tjd.davies@ntlworld.com and
confirming your details Becker United will then enter the details you have
provided and amend them to this list.
2. Please visit www.beckermusculardystrophy.org
( now becoming http://beckermd.org)
and register your details
Hi I suffer from alot of chronic pain in my chest area and lower back I am a
Rapper and it makes it hard too control my breathing but I am Doing well I can
walk but cant walk long distances I use a scooter too
travel. I have never ever met or talked too anyone with the same condition as
me believe it or not and would like too talk too others too see how they cope
with certain things and how their out look on having this disease is.
I am 35 years old. I am married and
have a daughter and a son. I am presently sitting on an excutive
chapter of the Waterloo-Region as VP. We have recently opened our chapter a
year ago or so, i thought I might of
been able to meet somebody with Beckers; well I was
wrong. Now that I found this website I have found a few people to e-mail, even
in
If you like a Friend send me some
e-mail Im 37 and I have BMD.
MY BMD
One of my closest family member has BMD. This an appeal to
every person reading this mail that consider me as your brother or your son and
help me. Please let me know what can we do to help him.
I understand that there is no regular medicine but i dont want him to suffer. So, please guide us with what ever
method possible to delay the ultimate to the furthest age. Currently he has
trouble getting up the stairs and falls down occasionally.
When I was 19, the doctors thought
I would have been in a wheel chair by my next visit, but I wasn't. I'm still
walking and getting around(not very well), but
sometimes I feel like I will soon be in that wheelchair, and that scares me.
I do not have MD but my uncle did.
I now have a 4 month old son and am a carrier. I won't know if he has it for
quite some time but I have a lot of questions such as things to look for.
·
Date:
01.12.06
·
Name:
·
Email:
joannbr@qwest.net
·
DOB
:09/07/91
·
Onset:
6 Diagnosis: 10 Deletion:
4-7 Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory:
No
·
Date:
11.12.05
My son
Daniel is 14 years old and is highly functional. He is on prednisone, which has
caused weight increase, and a stunt of growth.
·
Name:
·
Email:
jbdmod@yahoo.com
·
DOB
:07/23/54
·
Onset:
08 Diagnosis: 26 Deletion:
Frame: In-Frame Cardiac: Yes Ambulatory: No respiratory: No
·
Date:
11.21.05
---------------
·
Name:
Anthony Brown ( Tony) City:
·
Email:
nbrown@ceieng.com( using Parent's )
·
DOB
:9/28/75
·
Onset:
Diagnosis: 12 Deletion: ? Frame: In-Frame
Cardiac: Yes Ambulatory: Yes respiratory: No
·
Date:
01.21.04
I am
sending this for my son he will not have his Email sat up until next week.He is 28 yrs old with Becker. He has always been so
strong minded and had faith that there would be a cure soon. But lately he is
giving up, we try to keep his sprits up but it is not working now. I think by
talking with, chating etc with someone with Becker
might be good @ least he could gain a friend or two, which he does not have now . Nicki Brown
---------------------
·
Name:
·
Email:
customerservice@yourvitalhealth.com
·
DOB
:1953/12/07
·
Onset:
18 Diagnosis: 18 Deletion:
Frame: In-Frame Cardiac: No Ambulatory: No respiratory: No
·
Date:
05.17.04
Was
walking until just 5 years ago (45)
------------------------------------
·
Name:
·
Email:
felixthecat23@cox.net
·
DOB
:09231998
·
Onset:
5 yrs old Diagnosis: 5
yrs old Deletion: 46,47,49 Frame: In-Frame Cardiac: No Ambulatory:
Y respiratory: N
·
Date:
06.22.04
·
Name:
·
Email:
sallybee_42@yahoo.com
·
DOB
:08/11/42
·
Onset:
3 to 5 Diagnosis: 12
Deletion: Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory:
No
·
Date:
06.19.06
Am I the
only female with this disease? I was born in
·
Name:
For My Son:
·
Email:
hrallen1959@comcast.net
·
DOB
:05/07/91
·
Onset:
6 Diagnosis: 8 Deletion:
Frame: In-Frame Cardiac: No Ambulatory: No respiratory: No
·
Date:
05.16.05
Kurtis is a bright young man. He enjoys playing video games as most young boys
do. He is losing his ability to us his arms more as the months go by.His speach is somewhat
becoming inpaired. His spirit is high as his body
weakens. Let us pray for each other that reach leads us to arrrest
this disease. Stem cell reach needs are support As it
is a new hope on the cutting adge of this disease.
·
Name:
·
Email:
croraff@adelphia.net
·
DOB
:01/24/61
·
Onset:
5 Diagnosis: 19 Deletion:
Frame: In-Frame Cardiac: Yes Ambulatory: No respiratory: No
·
Date:
10.17.05
Heart
Transplant in Oct 92
·
Name:
·
Email:
·
DOB
:11/06/90 Onset: 7 Diagnosis:
10 Deletion: Frame: In-Frame Cardiac: No Ambulatory: No
respiratory: No
·
Date:
12.20.05
My son
Shane is 15; we have been living with the knowledge that he has BMD since he was
10. He was able to walk until about 2 years ago. He is now completely confined
to a wheel chair, and his upper body strength is very limited. In the last
several months we have noticed a curviture of his
spine; probably from not having the muscle tone in his back and from being in
the chair continuously. Having said all that; Shane is a surviver;
has a fantastic spirit; and a very good outlook! :)
·
Name:
·
Email:
·
DOB
:oct/14/85
·
Onset:
18 Diagnosis: 12 Deletion:
Frame: In-Frame Cardiac: No Ambulatory: No respiratory: No
·
Date:
07.12.04
I thing
that I want to do a lot of thing but I cant do them
because what I have may fevorite sports is soccer. I
want to go to the u.s air forces but I do thing I
can't I have a twin brother and he have in to these disses
is something that a prade to god to take me his hem
but a say to may self about may family I hope that one day they faing the cure or something that helps ase
play soccer futbol baseball basketball god bless all
boys and man that have these and think you for these web site god bless you to
thinks hector loza b
·
Name:
·
Email:
aku_814@hotmail.com
·
DOB
:08/03/1983
·
Onset:
13 Diagnosis: 17 Deletion:
Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory: No
·
Date:
08.04.04
·
Name:
·
Email:
·
DOB
:11/06/90 Onset: 7 Diagnosis:
10 Deletion: Frame: In-Frame Cardiac: No Ambulatory: No
respiratory: No
·
Date:
12.20.05
·
Name:
·
Email:
fballman44@aol.com
·
DOB :5/24/73
·
Onset:
3 Diagnosis: 4 Deletion:
Frame: In-Frame Cardiac: Yes Ambulatory: Yes respiratory: Yes
·
Date:
01.29.04
Colarado
·
Name:
·
Email:
mboston76@hotmail.com
·
DOB
:05/28/76
·
Onset:
9 Diagnosis: 27 Deletion:
Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory: No
·
Date:
06.17.06
I am a
real estate agent who still does well getting around using a cane for the most
part, but struggle greatly with stairs and uneven surfaces. My wife and kids
are great supporters! I am an outdoor lover, camping enthusiast, avid musician
(my college degree) and lover of life!
·
Name:
·
Email:
mysticmoonlight11@excite.com
·
DOB
:02/06/75
·
Onset:
6 yrs old Diagnosis: 7
Deletion: Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory:
No
·
Date:
11.05.04
I have
no idea what in and out of frame means. Can someone tell me what it means? As a
child,I had issues similar to those mentioned in
previous messages.At 7 years old I had a muscle
biopsy to determine the type of MD I had.The results
came back as Duchenne. Then eventually I started to
go through the falling alot stage at 10 years old. I
ended up having surgery to release my ham strings so that my feet would be
flat. I wore full casts on my legs for 5 weeks while everything healed in
place. Afterwards,I started
to wear full leg braces to walk. Then 8 years later,at 18,I had another muscle biopsy,which
my doctor suggested I had done to determine which form of MD I had since I was
still walking. I was re-diagnosed with Becker MD. At 20 I started using a power
wheelchair to get around outside of the house. I was still able to walk a
little. I lost my walking ability fully a few months after I had turned 23.
I've been in a wheelchair full time almost 7 years. I haven't lost much
physical ability since. To tell the truth,I'm
not sad or bitter about the fact that I can't walk for the most part. Of course
there's things I wish I could do but can't. My only choices were either to
accept it or be miserable. I don't feel sorry for myself. I definitely don't
feel like the world owes me because I'm in a wheelchair. :-) I fully believe
God made me with MD for a reason. I would never want to be anyone else. I
wasn't always this hopeful about my having MD and my life. I crawled up from deepest,darkest depths of
depression you could ever imagine to get to where I am today.(with God's help
of course. Even the darkest of clouds have a silver lining.
·
Name:
Ed Holland City:
·
Email:
edh36@yahoo.com
·
DOB
:6/28/64
·
Onset:
Early Chidhood
Diagnosis: 21 Deletion: Frame: In-Frame Cardiac: No Ambulatory:
Yes respiratory: No
·
Date:
12.12.05
I am
still walking and use a cane to help but extremely weak in my legs and arms and
upper torso.It seems to be progressing very quickly rate
and I am not sure how must longer I can avoid a wheelchair.
·
Name:
dominick
·
Email:
end_zone59@yahoo.com
·
DOB
:05/02/1996
·
Onset:
6 Diagnosis: 0 Deletion:
unknown Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory:
No
·
Date:
05.08.06
has problems walking,running, and has severe pain
at times.We don't know where to go for help with a
diagnosis. MD has been in the last three generations of mothers
family. Has not been seen in current generation. Would
like to know where we can get a list of doctors who can diagnose this condition
in central
·
Name:
Jim Nash City:
·
Email:
nashj@talstar.com
·
DOB
:08/03/43
·
Onset:
8 or 9 Diagnosis: 36
Deletion: what? Frame: In-Frame Cardiac: No Ambulatory:
Yes respiratory: No
·
Date:
02.07.06
I have a
definite diagnosis of Becker. Grandson has symptoms. Interested specifically in
managing so as to avoid damage to his muscles to extent we can.
·
Name:
Brent City:
·
Email:
zolnier2@comcast.net
·
DOB
:08/08/71
·
Onset:
3 Diagnosis: 13 Deletion:
Frame: In-Frame Cardiac: Yes Ambulatory: Yes respiratory: No
·
Date:
01.16.04
I had a
heart transplant in December, 1996.
·
Name:
Greg Tapley City:
·
Email:
gtapley@tapleyinsurance.com
·
DOB
:10/12/68
·
Onset:
Diagnosis: Deletion: Frame: In-Frame
Cardiac: Yes Ambulatory: Yes respiratory: Yes
·
Date:
09.29.05
My son
may have MD and so I am researching this.
·
Name:
James Mossbarger
Jr. City:
·
Email:
not2show4@yahoo.com
·
DOB
:03/25/80
·
Onset:
Diagnosis: 22 Deletion:
Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory: No
·
Date:
02.19.04
I
currently have a hard time looking for positive views on dealing with my condition.I know the Lord Above has blessed me in my life,but it is hard accepting the
facts of my condition.I have read alot
of the other personals on this website and its humbling to realize there are so
many out there who are going through the same things.Just
signing in, hope the best for everyone out there, sincerely!
·
Name:
·
Email:
carter7043@bellsouth.net
·
DOB
:11/03/59
·
Onset:
12 Diagnosis: 20 Deletion: ? Frame: In-Frame
Cardiac: No Ambulatory: Yes respiratory: No
·
Date:
09.10.04
I AM
STILL WALKING.i HAVE TO USE A
SCOOTER WHEN I go anywhere.I have alot
of lower back pain. I had to get an electric commode lift a few months back. I could'nt hardly get up. I cannot go up any steps and I have
to walk on level ground when I'm outside at my home. I would like to talk to
someone who has becker's
m.d.
·
Name:
·
Email:
carter7043@bellsouth.net
·
DOB
:11/03/59
·
Onset:
12 Diagnosis: 19 Deletion:
Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory: No
·
Date:
05.05.05
·
Name:
travon
·
Email:
·
DOB
:061092
·
Onset:
10 Diagnosis: 11 Deletion:
Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory: No
·
Date:
09.19.04
i'm speaking for my 12 year old son he's having problems walking,he's not able to run,and play like other kids his age and that sometimes
bother him.we don't know a whole lot about this
disease so if thiers anyone out thier
with information that might help us better unstand
his condition please write to us at p.o box 558 hagan,ga. 30429 we would forever thank you.
·
Name:
·
Email:
v0327@fmtc.com
·
DOB
:11/29/73
·
Onset:
4 Diagnosis: 31 Deletion:
unknown Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory:
No
·
Date:
08.21.06
Im A female that has Beckers
that has symptoms. I
would like to find another female that has symptoms, to know that I'm not the
only one.
I have wrote before. My 2 year old and I have Becker's. My 12 year old and no one else in my family that shows any systoms. I would like to hear from any women that
has Becker's to see what they are going through, to find out how they were
diagnoses
·
Name:
·
Email:
knytwyrm@yahoo.com
·
DOB
:05/17/60
·
Onset:
17 Diagnosis: 23 Deletion:
don't know Frame: In-Frame Cardiac: No Ambulatory: Yes
respiratory: No
·
Date:
09.10.04
Sometimes
this weeble does fall down. I'm just trying to deal
with the continuing things that I cannot do. I try to find things that I can do.
·
Name:
Stan & Tracy Duda (Joshua) City:
·
Email:
stan.duda@gmail.com
·
DOB :03/27/99
·
Onset:
Diagnosis: 4 Deletion:
Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory: No
·
Date:
09.04.06
Joshua
was diagnosed really on happens chance. He plays soccer and is in gymnastics.
He has always been a bit clumsy and we never realized before the diagnosis how
much of an issue that was. He is doing incredibly well given the range of
severity we have seen and read about. We would appreciate hearing from others
who may want to exchange information to share how their cases have progressed. We
are not really sure when his will progress or the severity of it at this point.
·
Name:
·
Email:
RayBryant3@yahoo.com
·
DOB
:05/19/1981
·
Onset:
6 Diagnosis: 7 Deletion:
Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory: No
·
Date:
09.04.06
I'm 25
and have Beckers. My condition has increased in
severity since 1999. I can still walk, but I fall more frequent. I use a cane
if I have to walk long distances or climb stairs without rails. Since age 7 I
have known about my condition and at school I would not tell any of the other
kids so they would make fun. I regret not telling people growing up, so if I
can give any advice it is this. Tell people, it will make things easier on yourself. Granted some people are disrespectful, but if
people are informed they will be more understanding. If you need to talk
contact me.
·
Name:
·
Email:
trishkelley@hotmail.com
·
DOB
:07/18/96
·
Onset:
·
Date:
02.25.04
·
Name:
autry keener City:
·
Email:
cjkeener@msn.com
·
DOB
:7/13/96
·
Onset:
4 Diagnosis: 6 Deletion:
Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory: No
·
Date:
07.15.05
My son
was diagnosed when he about 6, at first they thought it was dmd,
but after a muscle biopsy it was determined to be bmd
since the tests showed he had some dystrophin. My son
is slow to rise from the floor, but once he is up and moving he gets around
fairly well.We have been going to Riley hospital in
·
Name:
henry
·
Email:
zenaidapw@yahoo.com
·
DOB
:1946
·
Onset: ? Diagnosis: 30 Deletion: Frame: In-Frame
Cardiac: Yes Ambulatory: Yes respiratory: Yes
·
Date:
07.17.04
·
Name:
·
Email:
jrasmussen84@mchsi.com
·
DOB
:03/02/65
·
Onset:
Diagnosis: 30's Deletion:
Frame: In-Frame Cardiac: N Ambulatory: Y
·
respiratory:
No
·
Date:
01.05.06
I have jsut completed a carreer change.
I am now a LPN at a nursing home in
·
Name:
·
Email:
olson_jeffrey@hotmail.com
·
DOB
:07/06/83
·
Onset:
Diagnosis: 13 Deletion:
Frame: In-Frame Cardiac: Yes Ambulatory: Yes respiratory: Yes
Date: 05.16.05
I just wanted to know if there was
any good creams to rub on my muscles to ease some of the pain
·
Name:
·
Email:
kevincbarnes27@sbcglobal.net
·
DOB
:03/27/1959
·
Onset:
30 Diagnosis: 39 Deletion:
Frame: In-Frame Cardiac: Yes amulatory:
Yes respiratory: No
·
Date:
10.21.06
------------------
·
Name:
·
Email:
kevincbarnes27@sbcgobal.net
·
DOB
:03/27/59
·
Onset:
28? Diagnosis: 39 Deletion:
Frame: In-Frame Cardiac: Yes Ambulatory: Yes respiratory: No
·
Date:
07.17.06
In the
fall of 2005 they diagnossed me with a dilated cardiomyopathy with sever left ventricular dysfunction, my
left Ventricular Ejection Fraction was 20%, and the Blood Pressure was 162/102.
Since taking Coreg 1 25MG twice a day my ejection fraction
is between 30-32% and the cardiologist is very please. I'm take one Diovan 320 MG tablets a day and my Blood Pressure varies
between 120/80 to 130/90. As a precaution the installed a
prophylactic ICD 12/2005. I have a hard time climbing and going down
stairs, I go up and down one step at a time. It doesn't take much for me to
fall especaially walking on uneven ground or stepping
on something like a small rock with out knowing. Getting out of chairs has also
became more diffucult. I
find that doing hard work, like in the yard I have to pace myself and it takes
me longer to do everything.
·
Name:
·
Email:
slapshotgoal@yahoo.com
·
DOB
:10/22/76
·
Onset:
6 Diagnosis: 6 Deletion:
Frame: In-Frame Cardiac: No Ambulatory: No respiratory: No
·
Date:
04.15.05
·
Name:
·
Email:
laviniawhitt@qx.net
·
DOB
:1955
·
Onset:
30 Diagnosis: 50 Deletion:
Frame: In-Frame Cardiac: Yes Ambulatory: Yes respiratory: No
·
Date:
08.10.06
My
father died at 35, his father died at 31 of heart complications. Both had begun
falling and tiring, but had been active all their lives. My grandfather died
without exhibiting any other symptoms but my father was thought to possibly
have had MS, but at the time there wasn't an exact diagnoses.
No other relative is known to have been symptomatic. Mine started in my late
20's with tiring going up steps, by 35 I had a pacemaker due to CHF &
complete heart block of the sinus node. By age 46 I received a heart
transplant. Afterwards I needed a cane for balance and continued to trip until
my transplant surgeon insisted I get checked out. In 2005 I was tentatively diagnosed
with Becker. Unfortunately, there doesn't seem to be much out there for women
with this diagnoses.
·
Name:
Brandon Myers
·
City:
Bardstown
·
State:
·
Country:
·
Email:
carole_d_myers@yahoo.com
·
DOB
:09/17/1998
·
Onset:
0 Diagnosis: 7 Deletion:
Frame: In-Frame Cardiac: No Ambulatory: No
·
respiratory:
No
·
Date:
03.01.06
My son
(of which I adopted) was born with this disease. It took doctors over a year to
diagnose his situation of which they were treating for ADHD and Oppositional
Defiance. He has been a rapid growth child from 23 months until present, being
4'5" 76 lbs. He always has complained of his feet, arches, legs, back, and
arm pain but no one would listen, a response of "growing pains." This
was confirmed by a muscle biopsy of which the results were delivered to me
today.
·
Name:
·
Email:
hihat@mikrotec.com
·
·
DOB
:04/30/69
·
Onset:
Birth Diagnosis: 12 Deletion:
Frame: In-Frame Cardiac: No Ambulatory: No respiratory: No
·
Date:
10.20.04
·
Name:
·
Email:
tldavis5@adelphia.net
·
DOB
:03/22/95
·
Onset:
4 Diagnosis: 5 Deletion:
Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory: No
·
Date:
10.27.06
My son
was diagnosed at 5 years old and we were devastated. However, he is doing
wonderfully...very active in sports with only some pain when he goes from
little to no activity to a lot of activity (usually Winter
to Spring when baseball practice starts). He wears night AFO's
(leg braces) and stretches at night. He has an annual visit to an amazing
doctor...Dr. Thomas Crawford at Johns Hopkins. So far, so
good.
·
Name:
nicholas
·
Email:
mcbx2@verizon.net
·
DOB
:
·
Onset:
Diagnosis: Deletion: Frame: In-Frame
Cardiac: Yes Ambulatory: Yes respiratory: Yes
·
Date:
10.08.06
nick has not been diagnosed. we are starting the
process this week.
·
Name:
Shane K. Pule Jr. City:
·
Email:
guintrav@comcast.net
·
DOB
:08/24/2000
·
Onset:
5 Diagnosis: 5 Deletion:
3rd Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory:
No
·
Date:
06.21.06
Hello
all, I am writing for my son who was just diagnosed last month. Thank you so
much for this website, it is a source of comfort for
me. I am not sure if my son is inframe or outframe, I will let you know later. Shane was diagnosed
with diabetes type 1 in November which led us to his cpk's
being in the seven thousound range. That is all I
know as of right now. Talk with you all soon. Marybeth Pule
·
Name:
·
Email:
Timt325@yahoo.com
·
DOB
:08/22/1984
·
Onset:
Diagnosis: 6-7 Deletion:
Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory: No
·
Date:
03.12.05
I'm not
sure what you mean by onset. I'm a 20 year old male who was diagnosed with BMD
at the age of 6 or 7. BMD has gotten worse as I have been getting older, but I
refuse to let it beat me or get me down. I try to live a normal life and just
take it one day at a time. I have trouble walking a long distance and use a
wheel chair for the long trips and I need help getting out of a chair. Please
email me with your questions or just to talk. I could always use some new
people to talk to.
Massahusett
·
Name:
·
Email:
hi789@aol.com
·
DOB
:10/8/54
·
Onset:
42 Diagnosis: 44 Deletion:
Frame: In-Frame Cardiac: Yes Ambulatory: Yes respiratory: Yes
·
Date:
10.18.06
·
Name:
·
Email:
ne_Dobson3757@pop-hosting.com
·
DOB
:02/16/1980
·
Onset:
26 Diagnosis: 26 Deletion:
Frame: In-Frame Cardiac: Yes Ambulatory: Yes respiratory: Yes
·
Date:
11.22.06
·
Name:
·
Email:
pcabny4250@free-fast-email.com
·
DOB
:11/19/79
·
Onset:
26 Diagnosis: 26 Deletion:
Frame: In-Frame Cardiac: Yes Ambulatory: Yes respiratory: Yes
·
Date:
07.25.06
·
Name:
·
Email:
M_S_4216asd@my-super-mail.com
·
DOB
:06/08/1973
·
Onset:
32 Diagnosis: 32 Deletion:
Frame: In-Frame Cardiac: Yes Ambulatory: Yes respiratory: Yes
·
Date:
04.04.06
·
Name:
·
Email:
hbishop97@hotmail.com
·
DOB
:10/19/99
·
Onset:
5 Diagnosis: 5 Deletion:
Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory: No
·
Date:
06.09.05
·
Name:
·
Email:
afehsenfeld@chartermi.net
·
DOB
:07/03/99
·
Onset:
5 Diagnosis: 6 Deletion:
3-7 Frame: Out of Frame Cardiac: No Ambulatory: Yes respiratory:
No
·
Date:
09.17.05
·
Name:
cheryl
·
Email:
kidcarter40@aol.com
·
DOB
:
·
Onset:
Diagnosis: Deletion: Frame: In-Frame
Cardiac: Yes Ambulatory: Yes respiratory: Yes
·
Date:
04.04.05
I do not
have MD but my first husband did. He was killed in a car accident when our
children were small. My questions is: we have three
daughters and now that they are of the age when they may be considering having
children and i am wondering if they would be carriers
of the disease? Is it 100% that they would pass this on to their children?
Where should i have them go for testing and can they
be tested. All information will be greatly appreciated. FYI - my deceased
husband has two brothers - one brother (age 44) is very bad off with MD but the
youngest brother (age 33) shows no signs at all. Bother brother have two daughter each, one daughter has a son and daughter the other
daughter has 1 daughter. Should they have their children tested? Since i am not a carrier will this be passed on to my children?
·
Name:
·
Email:
jlk313@hotmail.com
·
DOB
:08031986
·
Onset:
12 Diagnosis: 16 Deletion:
Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory: No
·
Date:
04.12.05
My name
is Julie and it is my son, Jimmy, who has BMD. He was diagnosed 2 years ago and
many times I feel like I am on a roller coaster ride. I am so happy to have
found this website, I'd love to hear from other people who have been affected
by Becker's, it's nice to be able to have some support. Thanks
!!
·
Name:
·
Email:
lgbuslepp@charter.net
·
DOB
:08/02/43
·
Onset:
1 Diagnosis: 11 Deletion:
Frame: In-Frame Cardiac: No Ambulatory: No respiratory: No
·
Date:
08.15.05
·
Name:
james h blume jr City:
·
Email:
jhbjr@netscape.com
·
DOB
:05/13/45
·
Onset:
Diagnosis: 28 Deletion:
Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory: No
·
Date:
06.01.04
·
Name:
L
·
Email:
hayes@aaps.k12.mi.us
·
DOB
:050560
·
Onset:
0 Diagnosis: 0 Deletion:
Frame: In-Frame Cardiac: Yes Ambulatory: Yes respiratory: Yes
·
Date:
09.14.04
I am a
teacher assistant and will be working w/ a 6 yr old w/ BMD. Any fnformation on physical exercises or other helpful hints
would be great. He's a great kid but cries a lot when he is fatigued. I get to
be the one to urge him on to do just a little more. Is more ok if he's tired?
Thanks L
·
Name:
Carrie- mother of twins
with
·
Email:
·
DOB:
1995
·
Onset:
birth
·
Diagnosis:
4 Deletion: duplication
Frame: Out of Frame Cardiac: No Ambulatory: Yes
·
respiratory:
No
·
Date:
11.14.05
Hello, I
have enter info. on this site
before and have contacted some other listed here in regard to my 10 year old
sons. wishing more would contact me. I'm having an
issue with them going on Prednisone. I'd like to hear from others who have had
good or bad results from this steroid.
·
Name:
·
Email:
mandaarm@yahoo.com
·
DOB
:9-5-1997
·
Onset:
birth Diagnosis: 8 Deletion:
Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory: No
·
Date:
06.23.06
My name
is Amanda this is my son who was just diagnosed. I have no idea about frames we
have only been to the Dr. once. He has weakness in his
hips and peck muscles at this time. The Dr. said he will
chk his heart in about a yr since he is so young. I
would love for someone to let me know what to expect for him physically and
emotionally. He don't understand it right now because
he can keep up with other kids his age. I am praying that it doesnt effect him anymore but more than likly
it will and I know it will probably bother him. Someone please email me back i feel like nobody understands the feelings I'm having but i am trying to stay positive.
·
Name:
·
Email:
katt226603@yahoo.com
·
DOB
:Onset:
·
Diagnosis:
Deletion: Frame: In-Frame Cardiac:
Yes Ambulatory: Yes respiratory: Yes
·
Date:
06.14.05
·
Name:
·
Email:
rhonda2932@tds.net
·
DOB
:7/24/98
·
Onset:
7 Diagnosis: 7 Deletion:
48 Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory:
No
·
Date:
05.24.06
Have
submitted information in the past. Very mild symptoms presently.
One episode of calf muscle cramps. Mildly enlarged calves.
Can't run quite as fast as use to. Seeking
testimonials/advice on supplements. not sure
who to turn to, but would like to try CoEnzyme Q10,
Vitamins, and perhaps Creatine. Please email me with
any tips. Thanks Rhonda Bliss
·
Name:
·
Email:
biochemkris@hotmail.com
·
DOB
:05/18/05
·
Onset:
N/A Diagnosis: 7
months Deletion: 45 and 49 Frame: In-Frame Cardiac: No Ambulatory:
Yes respiratory: No
·
Date: 01.17.06
I was diagnosed
early because my mother is a confirmed carrier and my grandfather and some
other family members are affected by Becker Muscular Dystrophy.
·
Name:
·
Email:
cney@comcast.net
·
DOB
:08/31/1970
·
Onset:
Birth
·
Diagnosis:
34 Deletion: 46-48 Frame:
In-Frame Cardiac: No Ambulatory: Yes respiratory: No
·
Date:
02.10.06
I was
originally diagnosed with BMD when I was 11 because I had problems walking up
hills for long distances. I received a definitive diagnosis at age 33. I am now
35. I am looking into starting a support group in
I am a
35 year old male with BMD. My doctor just recently put me on permanent disability
because the disease has progressed slightly. I am in college part-time to be a
teacher. I want to continue working after college if possible. The BMD has
pretty much isolated itself in my thighs. I have a muscular build and the top
half of my torso is quite strong. I have difficulty with stairs and my back is
strained due to overuse, I find that a walking stick assists me greatly. The
only advice I can give to all of you is to protect your head and do not give up.The brain can do amazing things. If
anyone needs someone to talk to do not hesitate to e-mail me. I have
been a physical person all my life and it is difficult to come to terms with
parts that do not work.
·
Name:
robert
·
Email:
lillman262@hotmail.com
·
DOB
:12/1/50
·
Onset:
5 Diagnosis: 35 Deletion:
Frame: Out of Frame Cardiac: No Ambulatory: No respiratory:
No
·
Date:
06.27.05
·
Name:
Eric Funnell
·
City:
·
Email:
Efunnell27@aol.com
·
DOB
:02/17/1978
·
Onset:
Diagnosis: 17 Deletion:
Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory: No
·
Date:
07.17.06
I'm Now
28, was diagnosised after trying out for the Air
Force while i was still in High School. I have really
been starting to notice a Difference in everything i
do in the last 2 years. 2006 being the most notciable Year. I'm in far better shape than most
people at the same age. If you do get diagnosed the First Step I suggest is to
admit you have this. Stay in contact With Mda, I have
vesid in Ny.
And get as much education you can
·
Name:
·
Email:
wwind@rochester.rr.com
·
DOB
:01/14/67
·
Onset: ? Diagnosis: 38 Deletion: Frame: In-Frame
Cardiac: NAmbulatory:Y
·
respiratory:
No
·
Date:
01.06.06
·
Name:
Erich LeRoy City:
·
Email:
amos2550@aol.com
·
DOB
:02/07/91
·
Onset:
Birth Diagnosis: 7 Deletion:
Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory: No
·
Date:
03.23.06
Have
Trouble with stairs. Currently use an elevator if stairs are crowded, have a little
trouble standing up from ground, Im currently
independent
·
Name:
Peter City:
·
Email:
hochheim76@msn.com
·
DOB
:05/30.44
·
Onset:
17 Diagnosis: Deletion:
Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory: No
·
Date:
07.24.06
·
Name:
·
Email:
buswain@earthlink.net
·
DOB
:02/27/02
·
Onset:
1 Diagnosis: 2 Deletion:
24,25,26,27 Frame: In-Frame Cardiac: No Ambulatory: Yes
respiratory: No
·
Date:
03.24.05
Seth is
my 3 year old son. He was originally diagnosed with DMD but recently underwent
a muscle biopsy and further testing changed his diagnosis to BMD. We have no
family history of any muscular disease and all carrier tests have come back
negative.
·
Name:
Curtis R. EnglandCity:
·
Email:
ptengland3@hotmail.com
·
DOB
:01/13/52
·
Onset:
11 Diagnosis: 18 Deletion:
Frame: In-Frame Cardiac: No Ambulatory: No respiratory: No
·
Date:
10.04.05
I am
Patricia, my husband Curtis (53) is a Southern Baptist Minister and has had
symptoms of BMD since he was 11 but wasn't diagnosed until he was 18 for his
college entrance physical examination.His mother's
father was in a wheelchair and died when he was 67. His mother and her 3
sisters were carriers and Curtis was the first to be diagnosed and the only one
in a wheelchair full time at this time.He has cousins
(all men) who are in their late 50's and mid 60's who still walk some. We
married 9/29/90, we have no children.He has been in a
wheelchair full-time since 1992 after he fell out of the wheelchair and broke
his leg. He has had echocardiograms for the past 2 years and his heart is not
enlarged at this time but the BMD has progressed aggressively since June 2005
and he doesn't know how much longer he will be able to drive his handicap
accessible van. Cold weather causes stiff muscles and he stays inside as much
as possible during the winter.We are currently trying
to find a van with gas and brake hand controls that he can drive from his
wheelchair to save his energy. Anyone with info on prognosis (longest living
person with BMD)and/or info on handicap vans, please
email me.
·
Name:
Nathanial City:
·
Email:
jcy@ksu.edu
·
DOB
:1999
·
Onset:
7 Diagnosis: 7 Deletion:
49,50,51 Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory:
No
·
Date:
07.17.06
·
Name:
Travis C. Hall City:
·
Email:
tbhall@fuse.net
·
DOB
:04/14/73
·
Onset:
30 Diagnosis: 32 Deletion:
Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory: No
·
Date:
02.25.06
It is
very strange,one day I went
out to play Basketball and my right leg started giving out.I
thought I was deconditioned from being in college and
not exercising enough but the problem continued.I
went to an orthopedic doctor and he told me I had a torn miniscus,I
had that repaired and things continued to get worse but now things are somewhat
stable and some think I have been misdiagnosed. travis
·
Name:
·
Country:
·
Email:
tommiclark@wowway.com
·
DOB
:2/1/94
·
Onset:
8 Diagnosis: 10 Deletion:
Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory: No
·
Date:
02.13.06
We are praying to Jesus for healing, and looking for
any helpful information and testimonies we can find. Wondering how long he will
be able to walk - what the future holds. Directing Dustin to skills that he
will be able to use for the future such as music, computer, writing.
Believing God for a fulfilling life, and the ability to help others
·
Name:
calvin skipper City:
·
Email:
oskipper@hotmail.com
·
DOB
:1/20/95
·
Onset:
9 Diagnosis: Deletion:
Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory: No
·
Date:
03.02.04
This is
my nephew and he has all the signs of this disease. He has muscle weakness and
a hard time getting up from a sitting position, and he also has a hard time
getting up from a sitting position. His calfs are
very large for a child who does not work out and I hurt very deeply watching
the agonizing pain that he goes through on a daily basis. He also falls a lot.
I am just eager to learn more about this dredful
disease.
·
Name:
·
Email:
node@cinci.rr.com
·
DOB
:07/23/78
·
Onset:
18 Diagnosis: 18 Deletion:
unknown Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory:
Yes
·
Date:
12.15.05
have mild scoliosis of spine as a result of disease. i have also been diagnosed with graves disease, a
hyperthyroid disorder that is currently dormant atm, i have had my achiles extended as
i used to walk on my toes as a child. for the most
part i seem relatively a slow progressing patient but
there is alot of mystery as to whats
affecting the rest of me, i will openly state i am not satisfied with my local practitioners and am
seeking to relocate to a new area either in the united states or canada. u may email me with any
questions at nodewolf@aol.com or node@cinci.rr.com _ thank u
·
Name:
·
Email:
PINEYBLONDE@WMCONNECT.COM
·
DOB
:071789
·
Onset:
5
·
Diagnosis:
5 Deletion: UNKOWN Frame:
In-Frame Cardiac: No Ambulatory: Yes respiratory: No
·
Date:
04.20.05
THIS IS IN REGARDS TO MY
·
Name:
·
Email:
jsjackson@bendbroadband.com
·
DOB
:07/10/54
·
Onset:
Diagnosis: Deletion: Frame: In-Frame
Cardiac: No Ambulatory: Yes respiratory: No
·
Date:
06.14.05
·
Name:
michael green-kelsey City:
·
Email:
idellakelsey@msn.com
·
DOB
:10/26/96
·
Onset:
3 Diagnosis: 9 Deletion:
duplicate exon 44 Frame: In-Frame Cardiac:
No Ambulatory: Yes respiratory: No
·
Date:
09.25.06
my
condition is starting to progress. i
am having more and more problems.i have just been
seen by a cardiologist for tests because i have chest
pains and am geeting braces for my feet and legs to
help keep the muscles stretched. it is getting harder
to walk and play the games my friends play. but i still try , i just get tired
faster and have to sit down and sometimes take a nap.i
plan on walking for a long time.
·
Name:
·
Email:
robbiebob105@yahoo.com
·
DOB
:06/04/90
·
Onset:
Diagnosis: 7 Deletion:
Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory: No
·
Date:
01.28.05
My
condition is'nt very bad but I have a hard time
walking I have pain a lot and nobody likes me because I have somthing wrong with me. I hope someone finds a cure.
·
Name:
·
Email:
blznphillyjawn_6wun9o3@yahoo.com
·
DOB
:5/29/87
·
Onset:
n/a Diagnosis: n/a Deletion:
n/a Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory:
No
·
Date:
02.15.05
i dont have bmd. my father does. it has completely taken over his body. he
is now 38, and is in a nursing home. im
only 17 and losing my father is seriously affecting my life. i want to find more information
about bmd, i have been
looking on the internet, but i cant find anything
that really gives the complete explaination of the
disease. if anyone has any websites, or anything.. please email me
·
Name:
·
Email:
nerakhyatt@yahoo.com
·
DOB
:01-21-75
·
Onset:
6 Diagnosis: 13 Deletion:
Frame: In-Frame Cardiac: Yes Ambulatory: No respiratory: No
·
Date:
09.14.05
I am
writing for my son as I would like to be more informed about this condition, he
had a heart transplant almost five years ago. He was alking
up until then but since he used his arms to get up after the surgery he could
not use his arms because of the surgery so has been in a wheel chair ever
since. I also had a brother who had limb girdle md
who passed away at age 50 and we suspect a uncle on my
mothers side of the family had some kind of condition but I am not sure what he
died from.
Hello,
I have enter info. on this
site before and have contacted some other listed here in regard to my 10 year
old sons. wishing more would contact me. I'm having an
issue with them going on Prednisone. I'd like to hear from others who have had
good or bad results from this steroid.
·
Name:
·
Email:
jodimarie.nj@netzero.net
·
DOB
:09111989
·
Onset:
8 Diagnosis: 9 Deletion:
Frame: In-Frame Cardiac: No Ambulatory: Yes respiratory: No
·
Date:
09.29.04
I am
submitting this for my son who has BMD and also my brother who has it. Just want
to say God Bless all of you who are suffering from Muscular Dystrophy.
·
Name:
·
Email:
new.heart@verizon.net
·
DOB
:08/13/1961
·
Onset:
6 Diagnosis: 19 Deletion:
Frame: In-Frame Cardiac: Yes Ambulatory: No respiratory: No
·
Date:
12.31.04
I was
not diagnosed until 1981 at age 19. I was originally told I had Limb Girdle,
but in 1989 my diagnosis was changed to Becker's. In 1997 I developed heart problems
and in February 0f 1998 I underwent successful heart transplant surgery. I am
doing well. I am married with a 10 year old son and a 5 year old daughter. I
was never told of the possibility of major heart involvement, so please, if
anyone is not having annual cardiac checks, please look into it. Good luck to
all!
·
Name:
·
Email:
·
DOB:
04/01/96