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Here you will find information about Marfan Syndrome plus events which help raise funds for the National Marfan
Foundation. Occassionally you may find items for sale, in order to help the NMF with funds for research and education.
The main reason for my involvement with the National Marfan Foundation is due to my husband being diagnosed
with Marfan syndrome in the year 2002, after a life saving surgery due to his aorta dissecting and ruptureing.
Starting from the beginning, mys husband started having back pain and headaches in which he had a variety of tests
ran, finding that he had an ingunal hernia. The mysterious thing about this is that when he would make sudden
moves or watch a video game with lots of motion he would become very dizzy and sick to his stomach in which since that time
he does not play any type of video games. On Sept 28th he was scheduled for repair of this hernia.
All went well and he came home to begin the recovery stage. Having a restful night sleep and feeling pretty good the
next morning, I decided to run a few errands and left my husband home with our 19 year old son. I received a call
from my husband in which he demanded that I come home immediately, trying to assertain as to what I had done wrong or as to
why he needed me to return home, I finally got an answer that he said that he did not feel well and wanted to go back to the
hospital. We went to the hospital as he was palor, sweating, complaining that he had an elephant on his chest and that
his neck was so very sore and stiff. Upon reaching the ER he was taken for tests, but treated with nytroglycerine as
if he was having a heart attack. As all the tests said that they could not figure out what was wrong he was admitted
for observation. It was finally agreed that he would have a heart cathiter done on the Monday. The next thing
that was said is that her is the culprit and he was rushed to another facility for emergency open heart surgery. Trying
to get an answer from the Dr. who did the cathiter was impossible, he told me that I needed to go immediately to the hospital
in which my husband was being transferred to. I drove to get my son's at work and tried to explain that their father
was in need of immediate open heart surgery. Everyone made it to the hospital before me as I went to pick up my father
who wanted to go and I got lost. I was unable to see or talk to my husband before he went into surgery. At
the time he was only 42 years old. 11 hour reconstructive heart surgery was performed, and I was told that
I should get our affairs in order as he was not expected to live the night. I went home in tears, as there was nothing
that I could do for the man I loved, the father of our 2 sons. He was not going to be around for the birth of our
first grandchild. I kept beating myself up as I was not there for him when I should have been, and if I had not have gone
to get my dad, and if this and if that, I drove myself totally insaine. I did not receive a call from the hospital that
night, which was a good sign, so first thing in the morning I went to see him, he was on life support and in a coma, this
lasted for 14 days. I was shocked to see all the machines, tubes, blood, and medicines attached to him. I
was not prepared for this. When you see someone as active as he, playing basketball, swimming, bowling, and having fun with
family members, you just cannot imagine the fact that they are not capable of smiling, talking or touching you voluntarily.
Life support machines were keeping him alive, and everytime the Doctor would request that the nurses lower the oxygen and
slow the ventolator, his breathing would become labored and he could not sustain life by himself.
On the 15th day my husband awakened, not able to sit up, feed himself, walk, or breathe without oxygen, however with
the support of the medical team and physical therapy he was able to return home after 27 days of hospitalization.
Upon returning home, I had to prepare special meals for him, which were easily chewed or swallowed, help him take a shower,
feed him as he could not use any utensils, cups, straws etc. A young vibrant person lost all ability to do what
we all take for granted.
Six months after his surgery my husband went for his check-up and they found a problem in which he had to
have careful monitoring. Upon his 9 month check-up he was told that he would have to undergo yet another open heart
surgery due to a dissection, but because of careful monitoring and the knowledge that our surgeon had, there was no rupture,
just a very slow leak. Nine hours of surgery, and the surgeon stated that all seemed to have gone well. I went
to the hotel in which I was staying as the hospital was quite a distance from our home, the next morning I called to see how
he was doing, and was told that he was in his room awaiting his family. I figured that the nurse just did not want to
alarm me, so expecting the worst like the last surgery, I went up to the room and there he was smiling and full of live.
Miracles do happen as it is now 2004, and after having two open heart surgeries in a years period of time, he
is still here, and we are expecting our 3rd grandchild.
Although there are positive indications that both of our children have characteristics of the Marfan syndrome, conclusive diagnosis
has not been made.
Our eldest, 24 years old has Aortic Regurgitation, Flat feet, and chronic issues with his lungs.
Our youngest 22 years old, no children, however he has skeletal manisfetations, being tall, lanky, slight curvature
of the spine, flat footed, slight caving of the chest bone, and lung problems, where he has chronic bronchitis.
We have been told that our two grandchildren ages 18 months and 6 months have some characteristics, but their physician
does not know much about Marfan syndrome. We have one more on the way from our eldest child. We hope that
he will consider all the options in order to make life choices by having his children checked for the marfan syndrome.
As this is very high in cost, many younger people cannot afford to acquire the much needed tests until it is too late, and
with some types of insurance, you cannot go to a Dr. of choice, thus the possibility of mis-diagnosis, and sudden
death being more plausable. We hope that after you read this article that you will generously give to help with research and
education support. Many people think that just because you are married to someone that you automatically have the ability to access savings
such as 401K, and IRA accounts that are in your spouses name so that you can make ends meet, but the fact of the matter is
that you must have power of attorney, not only for medical treatment, but also for financial matters too. (please feel
free to print the forms on this website.)
If it has not been for the wonderful information that the National Marfan Foundation provided to our family,
I don't know how we as a family would have made it through. I became a volunteer as well as an advocate in fundraising
for the NMF.
Karen Wolk the social worker for the organization was so very helpful and giving you comfort during not only the
time of stress, but also following up with you upon your request.
Karen can be contacted by visiting the link on the right.
Who's got Marfan?
We've got Marfan!
Olympic volleyball player Flo Hyman, had an undiagnosed case of the Marfan syndrome.
Collegiate basketball player Chris Patton (d. 1976), basketball player for University of Maryland, had undiagnosed
Marfan syndrome.
Donnie Smith was a bona fide sportsman. He loved basketball and bowling; skiing and soccer; football and
track. He excelled in karate and softball, says his mother, Sue Smith. Mr. Smith, 25, died Tuesday at St.
Elizabeth Medial Center in Edgewood of Marfan syndrome.
The aneurysm that killed Florida State women's basketball player Ronalda Pierce in June was brought on
by Marfan syndrome as originally suspected. Pierce, 19, died June8 after suffering an aneurysm that ruptured her aorta.
Ritter Family Files Wrongful Death Suit "The suit said Ritter died in September 2003 of a
tear in his aorta. But when he went to the emergency room complaining of chest pain, nausea and vomiting, he was misdiagnosed
as having a heart attack, the suit alleges."
JONATHAN LARSON:
playwright of the Broadway show Rent, died from an aortic dissection. This was most likely
due to the Marfan syndrome. He also wrote tick, tick.....BOOM!
There is serious speculation that Abraham Lincoln had the Marfan syndrome. Early Pictures of him
clearly shows some of his Marfanlike traits.
British classical composer John Tavener has the Marfan syndrome.
Pharaoh Akhenaten's portrayal in art suggests symptoms of the Marfan syndrome. Check out "The
Mystery of Akhenaten:Genetics or Aesthetics? by Megaera Lorenze and Diagnosing an Engimatic Pharaoh.
Russ Hexter, director of the movie Dadetown, had Marfan syndrome. He died shortly after the movie
was finished, at age 27, of an aortic aneurysm.
Niccolo Paganini may have had either Marfan syndrome or a similar connective tissue disorder, Ehlers-Danlos
syndrome.
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Visit the National Marfan homepage
Cathie Tsuchiya - Administrative Director & Chapter Liaison
Karen Wolk, CSW - Director of Support Services
Jonathan Martin, M.S. - Director of Programs
There are currently no listings for these states shown below. Please check nearby states, or you may contact the NMF
Social Worker at:
To talk to us about our experiences with Marfan Syndrome
Jeanette Navia Marfan website
Visit Stanford Medical Center
Canadian Marfan Association
Children's Heart Institute
Cleveland Clinic
United Kingdon Marfan Organization
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Characteristics of the Marfan Syndrome? (Copied from the NMF WEBSITE)
The Marfan syndrome affects people in different ways. Some people have only mild symptoms,
while others are more severely affected. In most cases, the disorder progresses as the person ages. The body systems most
often affected by the Marfan syndrome are:
Skeleton - People with the Marfan syndrome are typically,
but not always, very tall or taller than unaffected people in their family, slender and loose jointed. The Marfan syndrome
affects the long bones of the skeleton. Therefore the arms, legs, fingers, and toes may be disproportionately long in relation
to the rest of the body. A person with the Marfan syndrome often has a long, narrow face, and the roof of the mouth may be
arched, causing the teeth to be crowded. Other skeletal abnormalities include a sternum (breastbone) that is either protruding
or indented, curvature of the spine (scoliosis), and flat feet. For more information:
Eyes - More than half of all people with the Marfan syndrome experience dislocation of one or both lenses of the
eye. The lens may be slightly higher or lower than normal and may be shifted off to one side. The dislocation may be minimal,
or it may be pronounced and obvious. Retinal detachment is a possible serious complication of this disorder. Many people with
the Marfan syndrome are also nearsighted (myopic), and some can develop early glaucoma (high pressure within the eye) or cataracts
(the eye's lens loses its clearness). For more information:
Heart and blood vessels (cardiovascular system) - Most people with the Marfan syndrome have problems associated
with the heart and blood vessels. The valve between the left chambers of the heart is defective and may be large and floppy,
resulting in an abnormal valve motion when the heart beats. In some cases, the valve may leak, creating a "heart murmur,"
which a doctor can hear with a stethoscope. Small leaks may not cause any symptoms, but larger ones may result in shortness
of breath, fatigue and palpitations (a very fast or irregular heart rate). Because of faulty connective tissue, the wall of
the aorta (the large artery that carries blood from the heart to the rest of the body) may be weakened and stretch, a process
called aortic dilation. Aortic dilation increases the risk that the aorta will tear (dissect) or rupture, causing serious
heart problems or sometimes sudden death. For more information:
Nervous system - The brain and spinal cord are surrounded by fluid contained by a membrane called the dura, which
is comprised of connective tissue. As people with The Marfan syndrome get older, the dura often weakens and stretches, then
begins to weigh on the vertebrae in the lower spine and wear away the bone surrounding the spinal cord. This is called dural
ectasia. These changes may cause only mild discomfort or may lead to radiated pain in the abdomen or to pain, numbness or
weakness of the legs. For more information:
Skin - Many people with The Marfan syndrome develop stretch marks on their skin, even without any significant weight
change or pregnancy. These stretch marks can occur at any age and pose no health risk. The stretch marks tend to appear at
sites subject to stress such as shoulders, hips and lower back. The stretch marks require no treatment. In addition, people
with the Marfan syndrome are also at increased risk for developing an abdominal or inguinal (groin) hernia where a bulge develops
that contains part of the intestines. This requires medical treatment.
Lungs - Although connective tissue abnormalities make the tiny air sacs within the lungs less elastic, people with
the Marfan syndrome generally do not experience noticeable problems with their lungs. If, however, these tiny air sacs become
stretched or swollen, the risk of lung collapse (spontaneous pneumothorax) may increase. Rarely, people with the Marfan syndrome
may have sleep-related breathing disorders such as snoring or sleep apnea (a sleep disorder characterized by brief periods
when breathing stops). For more information:
My husband has these Characteristics:
6'4" tall
Lanky as a younger man
Caved in Chest wall as a younger man
Flat Feet
Hypermobility
High roof in mouth
disproportionate length of toes
Very slight scoliosis
Chronic Bronchitis
Size 15 shoes
His Young Man clothers were 26 waist x 38-40 length
Now he wears only a 36 length, I think due to the aging process.
Our Eldest son is only 5'11" however he has Aortic Regurgitation
Mitral Valve Prolapse
Flat Feet
Very Mild scoliosis
Crowded teeth and High arch in mouth
Spindle like fingers
Our Youngest Son is 6'4"
Has not got any heart problems
Has chronic problems with his lungs
Mild scoliosis
Flat feet size 15
High roof of mouth and crowded teeth
Lots of joint manifestations
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Fundraising Events Currently Known
If you would like to list your event, as a fundraiser for the National Marfan Foundation, please email me so that I may add
it for you. Thanks
Location:
I-X Center Cleveland Christmas Connection
Westlake, Ohio 44145
Admission Fees $8.75 for adult.
16 and under FREE.
Booth Number 1263
For our location, please go to the information booth, Near circus.
Come see Santa, Sugar Plum House, Chris T. Bear, Wiles Brothers Miniature Circus, Kids World, Ride the Ferris Wheel, or eat
in the Food Court.
November 18th - 10-8pm
November 19th - 10-9pm
November 20th - 10-9pm
November 21st - 10-6pm
Bring your packages from home, from other vendors or ones purchased from us, we will gift wrap them while supplies last
with a .50 cent donation per item.
Price includes: Ribbon and/or bow, Gift Tag, Paper. All money collected for the gift wrap goes to the
National Marfan Foundation.
Gifts, Engravable ornaments, Wax Burners, Crafts, some collectables. GREAT pricing some items starting at only
.25 cents. come early as there will also be freebies while supplies last.
WOW
Proceeds from this event goes directly to the
National Marfan Foundation, to support "Education" of early detection of the Marfan syndrome in order to save lives.
SEE You there!!!!!!!!!!!!!!
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