BAV, Dilated Aorta, Myopia and Rosacea

[pekster11]

Hi folks,
Haven't posted for a while.
I have a question regarding connective tissue disorder and my own condition.
I have BAV and recently, my ascending aorta has dilated.
When I turned 30 (am now 37), my once perfect eyesight, deteriorated so that I am now myopic (near sighted). Also whilst in my early 30s I developed Rosacea which I now have under control (although my skin is still much more sensitive to sunlight than it used to be).
Could all this be connected ?

As a further point, I have an identical twin brother who DOES NOT have BAV or a dilated aorta !
He did become myopic at exactly the same time as me, and also developed rosacea at the same time (although milder)

I also suffer from hayfever (grass pollen allergy), whilst my twin does not..

p.s I definitely do not have Marfans

Do you think, given my identical twin does not have BAV, my possible connective tissue problems has a genetic basis ?

 

[Duff Man]

I have all of the above. Just recently discovered that Rosacea was attacking my eyes. Everything is blurry now, especially at night. Glasses don't help. I'm about a decade younger though. I feel like there is definitely correlation, but I'm not sure about causation.

 

[Duff Man]

by the way, have you found a way to fix the blurriness yet? Did it cause an astigmatism or just myopathy? I have asymmetrical astigmatism with corneal thinning and ulceration. I'm hoping that stem cell therapy in the pipeline might be mainstream by the time I'm legally blind.

 

[pekster11]

Hi Duff Man,
My myopia isn't so bad too be honest. I need to wear glasses whilst driving and watching TV from a distance, but other than that my eyes can cope.
Berfore the age of 30, I had 20:20 vision though.

As for the rosacea, I've managed to get that under control by first completing a course of tetracycline (same stuff they use to help with acne)..this got rid of the inflamation and redness in the face. After that I just avoid triggers, such as stress, spicy food, too much alcohol and strong sunlight.
My skin, as stated, is still overly sensitive to sunlight. I put on sunscreen factor 50 in April in the UK !!

I am curious as to how much of the BAV, dliated aorta, rosacea, hayfever and myopia I have developed is part of a vascular, connective tissue disorder. Even more curious as to why my identical twin brother has developed some, but not all of this.

 

[CATDOG]

Is rosacea a connective tissue disorder? I have systemic lupus which is sometimes referred to as a connective tissue disorder. I also have a bicuspid aortic valve which I've read here could have some related/associated connective tissue issues. However, I believe there is a difference in how each problem relates to "connective tissue" issues. While I think the valve's bicuspid formation may possibly be related to an underlying connective tissue/cellular? disorder, it doesn't work the same for the lupus. Connective tissue issues don't cause the lupus, it's more that the lupus just picks on various connective tissues. Btw, my identical twin also has lupus, but apparently not a bicuspid valve per a recent echo.

 

[francie12]

My son has all three of these too, along with migraine. I've been out of the loop for a couple of years. Has there been a study about other conditions that go along with BAV? If not, there should be! I'll try to find one and check in if I succeed.

 

[Jacque]

I had never heard about the rosacea before, but I had noticed my face is red. I'll start using a sunscreen. I do have blurriness also. I have an appt. Feb. '12 and will ask the cardiologist. Everything hit the fan one week after I gave birth. As for the BAV, no one else in my family has this. Yippee me! After nearly 17 years I do pretty much everything I want and lead a busy, full life. It's important to exercise if your cardiologist has okayed this. I just finished a 2 1/2 mile hike and work out a minimum of 30 minutes M-F. Plus I walk a mile with the dogs at least 3 times a week. Most important...stop worrying...live your life, enjoy EVERY moment.

Here's my timeline from one week after I gave birth in 3/95...
• 1995 - Vision problems. (Felt like a twisting behind my eyes) TIAs (mini-strokes) started. Aspirin started on my own.
• 1996 - Diagnosed with congenital heart defect, Bicuspid Aortic Valve (BAV) w/mild stenosis.
• 2000 - Shortness of breath (SOB). Misdiagnosed with asthma for 3 years.
• 2003 - Hole in heart and Factor V Leiden (FVL) diagnosed which is a clotting disorder. FVL happens with 5% of European-descent people. Coumadin started. (It took 8 years of countless doctors before the correct diagnosis of a PFO/FVL showed me I wasn't crazy. I had vision problems and TIAs consistently for 8 years before I went on the Coumadin.) Always be your own advocate! You know your own body.
• 1/27/03 - PFO (Hole in heart) plugged by going up the legs with catheters. SOB stopped.
• 2/16/07 - Open Heart Surgery for BAV w/severe stenosis (St. Jude Valve - it clotted). On heart/lung bypass machine.
• 2/20/07 - Open Heart Surgery (Carbo Medics Valve). On heart/lung bypass machine.
• 2/20/07 - Opened up again for excessive bleeding.
• 2/26/07 - Pacemaker implanted because of irregular AV node. 25 mg. of Metoprolol succinate started.
• 3/02/07 - Discharged from the Mayo.
• 3/14/07 - Hospitalized for 2 days because of fluid on lungs.
• Future - Repair aneurysm on mid-ascending aorta. It's at 3.8 cm (1/2") and I'll have surgery at 5 cm (2"). Caused by the 2007 surgery. Need to keep blood pressure down, avoid high isometrics, lifting over 30#.