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Mini Conference @ Stanford University in California

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Last February 03, 2018 I joined a Marfan Volunteered Planning Meeting at Stanford University here in California. This event was in preparation for their up-coming National Marfan Conference on July 12 – 15, 2018 That experience was really wonderful, I got the chance to meet again other people with marfan syndrome, (even had photos with some of them). During that meeting, they mentioned the possible topics that will be discuss during the upcoming Conference and at the same time they encourage people to do volunteer during the event.
Their possible topics during this conference are the following: (targeting medical issues/led by professionals) Osteoporosis Feet Aortic disease Pain management Gastro specialist Eyes (at least two maybe 3 sessions) Back Related issues (Loeyes-Dietz and “other related”) Feet Gyn focused on women’s issues Ob focused on Marf pregnancy Genetics/research Dural ectasia/CSF leaks/spinal headaches Headaches
And other topics is about how family members cope with Marfan Syndrome in …
Abdominal Surgery
I suppose the title of this should be “Surgery for someone with artificial heart valves who is taking the blood-thinner warfarin,” but that is a little long, even though it is more accurate.  As you read this, remember that I am a patient, not a doctor.  This is my experience, as best I can explain, and may not be the same as others in a similar situation might experience.
A few months ago I was diagnosed with endometriosis, a fairly common affliction of younger women best described in this article: https://jeanhailes.org.au/health-a-z/endometriosis/symptoms-causes
Although the affliction is common and the surgery to remove the cysts is fairly simple and routine, it became more complicated due to my artificial heart valves and the warfarin all artificial heart valve recipients must take to thin the blood to prevent clots forming on the valves.
Warfarin patients must be weaned off the warfarin for several days prior to surgery to prevent excessive bleeding.  So I took my …

My Birthday!

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September 17, 2015 (My Birthday!!!)
I guess that I am not a great Blogger in that I do not post as often as I should…but I am REAL GOOD at responding to readers who read this blog and are interested in learning more about Marfan’s Syndrome!
Over the last year I have been in touch with Jeffery, Rose, Sharmaine, and John who have all been happy to find they were not alone in the world and were glad to compare notes with others with Marfan’s.  Rose, a college professor, even visited us here in CDO and each of you has an invitation, but maybe not all at the same time!  Here is a photo of Rose and myself:

The most common feature of Marfan’s that we seem to share is the problem of dislocated lenses.  The on-line research my Uncle Joe did when I was first diagnosed indicated that the best option was to get the lenses removed and wear tri-focal glasses.  Replacing the lens, which is common for “normal,” non-Marfan eyes, was NOT RECOMMENDED for me because the connective tissue which failed to hol…

Refreshing My Memory

It has been three years or so since I had my eye and heart surgeries. A lot has happened in those four years, and my life direction has changed.

When I was in elementary and high school, before I had my eye and heart surgeries and before I even knew I had Marfan’s Syndrome, I noticed that I easily got tired playing with my cousins and in some of my activities at school. I remember my struggles in high school military training – although I accomplished the training, sometimes I felt like I was climbing Mount Everest! My vision was also bad, but, because we lived in the countryside and had very little medical treatment available, I just had second-hand glasses.

Then I went to the city for college, and during my first year we discovered I had Marfan’s. My eyesight had became so bad that my aunt and uncle asked me to find the best eye doctor available and get prescription glasses. We were all startled and confused when the eye doctor said I had “dislocated lenses,” but my uncle wen…

Finally I'm Back

Hi everyone if you happen to bump into my blog, it’s been a long… long… time already that I haven’t able to post, for some reason.

Years past so quick but still here I’am facing the world despite of my situation. Having this Marfan Syndrom is not easy, but in my case I’m so thankful to GOD, for giving me a second chance in life.

Please feel free to post any questions or visit me in my facebook, or email me and I’ll be glad to share my extra ordinary experience in life in dealing with Marfan Syndrom. Add or visits me in the following website.

Email & Facebook: cindy_linker17@sbcglobal.net

God Rides a Jeepney

Last Sunday, after my cousin Marilyn and I went to church, we went to Gaisano Mall to buy my meds and some stuff for here at home. After we finished at the mall, we walked to the park near Gaisano to wait for a Bayabas jeepney.

Before too long, here comes a Bayabas jeep, and the helper was shouting “Bayabas,” and we saw this old man, with very ragged clothing and no slippers, trying to ask favor from the jeepney helper, that he would like a free ride to Bayabas. But the jeepney helper refused the guy, and the same happened with the second and third Bayabas jeepneys. They never let him ride. To me, he was not like the others, he just seemed to be a traveler.

Marilyn and I just observed the guy, letting all our jeeps pass by. We waited to see if that old man could ride. We talked to a lady, a vendor, and even she felt sorry for the old man, because he had been standing there for a long time already. All the drivers refused to give him a ride. I could see that the vendor was also …

Memories

Last Saturday I took a day off from studying to give my mom a break and work for her at my Ate Carol’s beauty parlor. Last year, Ate Carol (“Ate” is pronounced like “Auntie” if you drop the “un” and is used as a title of respect to any female older than you) slipped and fell at a store near her home in California. She got a little insurance money and used it to build a beauty parlor here in Cagayan. I don’t think she got enough money – her back is still very painful – but the parlor is wonderful! We all work to keep it perfectly neat and clean, and business is picking up after a slow summer when people were all staying home due to the flu.

Back in California last summer, Ate collected outgrown clothes from her kids and friends, bought more from the goodwill store, and shipped them here. Two weeks ago, we started selling them from a booth outside the parlor. Business is good, and the selling of the clothes is what I was doing.

As in most Asian countries, here in the Philippines there is …