B.O.T.H [Marfan's information]

25/02/2016

With Marfan Awareness Month coming to an end I would like to write a post discussing something personal. I was diagnosed with marfan syndrome from birth and ever since I hit my pre-teens all I heard from doctors is how I couldn't ever conceive a child. So what are the real facts about pregnancy and marfan syndrome?

Well the truth is many of women who have marfan syndrome do in fact birth children with minimal complications. But here are some things to consider;

Risks for the mother;
As with any cardiovascular problems, these issues can cause high risks for the woman. Pregnancy can put additional stress on your heart and increase the risk of aortic dissection even after the child is born the risk can still exist for months, additionally pregnancy can cause increased dilation For this reason, women who have a dilation of near 40mm should not even consider pregnancy. Furthermore, birthing a child can cause long-term and unpredictable damage to and may result in premature death. Fatal complications during or after a delivery have been known to increase in patients who have had a mitro valve surgery or prophylactic aortic root surgery.
In a study done of 125 women between the ages of 21-36 Major complications included arrhythmias, dissection or rupture of residual aorta, heart failure due to mitral valve disease, endocarditis, and intercerebral or spinal hemorrhage.

Risks for the baby;
The likelihood that a child will be born with marfan syndrome is at least 50%. Additionally, even if the mother has a mild form of marfan syndrome the child can develop a much more severe form. The risk of aortic dissection for the mother can also carry substantial risks to the mortality of the child, and due to this fact premature birth is also a common factor with a rate of 40%. It is important to note that after successfully having a child you should have them tested for marfan syndrome as soon as possible.

Preparation and safety;
Before conception takes place a patient with marfan syndrome should contact their doctor and undergo tests to make sure the function of their heart is stable and the possibilities of dissection are few. The woman should also make sure that she is well informed of the risks presented by the pregnancy process and the potential for hereditary marfan syndrome. Additionally the use of a beta blockers, while possible, can pose some potential side effects. Though over all favorable the following side effects can occur;fetal growth retardation, bradycardia, hypoglycemia, hyperbilirubinemia, and apnea at birth in the newborn.

Likelihood of death in patients with marfan syndrome who conceive was recorded as being 3 cases in every 70 patients by a study done in Yemen. It is considered a good idea to frequently request a 24 hour heart monitor by your doctor so that the activity of your heart can be monitored for any changes.

If you are a mother with marfan syndrome please feel free to comment your experience to us.

10/02/2016

You often hear of new research surfacing on the treatment of cancer, diabetes and autism. But what about current research regarding Marfan Syndrome? Though not as publicized, there is research being funded for the study of marfan syndrome.
Recently, research has shown that the blood pressure medication losartan (also called cozzar) has been linked to prevention of aortic dissection and weakening in mouse models. Additionally, research is now being conducted on human subjects.

09/02/2016

Did you know February is Marfan syndrome awareness month. Use this month to raise peoples awareness of this illness. Many people with marfan syndrome go undiagnosed. If you or a spouse, or family member have marfan syndrome please make sure to visit a doctor and undergo testing to ensure that you or a loved one did not inherit the illness. The physical signs are not always present.

28/02/2012

Well looks like I'm coming up on another surgery soon. Aortic valve replacement, this is a cardiac surgery procedure in which a patient's failing aortic valve is replaced with an alternate healthy valve. The aortic valve can be affected by a range of diseases; the valve can either become leaky (aortic insufficiency / regurgitation) or partially blocked (aortic stenosis). Aortic valve replacement is open heart surgery. The following link is a animation of the general surgery procedure. Aortic valve replacment is a surgery that people with Marfan's syndrome often under go. http://www.webmd.com/heart-disease/video/aortic-valve-replacement

Learn more about aortic valve replacement by watching this animation.

23/12/2011

LUNG EMERGENCIES...
What is spontaneous pneumothorax?

Spontaneous pneumothorax is a collection of air or gas in the space between the lungs and the chest that "collapses" the lung and prevents it from inflating completely.

What are the symptoms of spontaneous pneumothorax?

Symptoms of a pneumothorax include chest pain that usually has a sudden onset. The pain is sharp and may lead to feelings of tightness in the chest. Shortness of breath, rapid heart rate, rapid breathing, cough, and fatigue are other symptoms of pneumothorax. The skin may develop a bluish color (termed cyanosis) due to decreases in blood oxygen levels.

23/12/2011

Here is a packet that you can download to keep all your medical information in one space incase of an emergency. We would like you to take advantage of this, if this is filled out and keep within reach during an emergency this could make a difference between life and death for some. http://marfan.org/marfan/2765/Emergency-Information-Packet

23/12/2011

It has been awhile since this page has been updates, our apologizes to all those that are following this page. We have had several different things happen, but we are now back to give news and motivational messages to all.

01/03/2011

Thousands of people, including children, have Marfan syndrome and don't know it. Their lives are at risk. With each person that helps bring attention to this you might just be saving a life.

27/02/2011

Daily Informative Fact....As crazy as it may seem, pulling a tooth could potentially kill someone with Marfan's Syndrome. Weak heart valves are especially prone to infections. People with Marfan's Syndrome are usually given antibiotics after any kind of surgery, and sometimes even after routine dental exams.

25/02/2011

Daily informatve fact...So apparently If you live in the Cleveland area,there will be an annual fundraiser being held on April 9th to benefit the NMF. It is a march for marfans!