Generations of Marfan: Part 1

#strongwomen #writer #author #entrepreneur #blog #blogger #canadian #alberta #kingdom #faith #marfanawareness #marfan #marfansyndrome #genes #geneticdisease #genetic #chronicillness #illness #sickness #disorder #hospital #parenting #moms #kids #grandkids #grandparents #parents @MarfanFdn @themarfanfoundation @diane.herzog @zephyrwildrose @themarfanfoundation

Well, how to try and explain genetic disorders to a child? I honestly can’t remembered the first time that anyone sat down with me and explained it to me. I just processed that I had to get poked and prodded and taken to different hospitals and doctors. One thing I really hated was having my eyes dilated. Sometimes we had to do it days in advance, and I remember being about four in Quebec, staying at my aunt’s house in Montreal, being held down so that my mom could put the drops in my eyes. It was awful! I vaguely remember having braces and casts on my legs when I a preschooler as well, because my legs were so crooked. But other than that, I don’t have a lot of early memories of dealing with it – it was just a part of life. What will Obsidian remember? Being a YouTube star, of course!

So what is Marfan’s syndrome? Well, it can involve a lot of things. The basics are that it’s a connective tissue disorder that arises because of a defective fibrillin gene, which reduces the integrity of the materials that hold the body together. It is also usually accompanied by fast and abnormal growth. This can manifest itself in various ways, both in severity and type. For me, this resulted in stretched ligaments in my eyes that resulted in dislocated lenses, which affected my vision and also led to glaucoma. I have elongated limbs and digits that are also hypermobile and slightly misshapen. My arms and legs are disproportionately too long for my body, which is more or less a normal size. I have stretch marks all over my body.

When I was pregnant, I also had a dynamic cervix that made the pregnancy dangerous for me and the little fiend. I also used to have mitral valve prolapse and aortic root enlargement, just like my son does now, but I grew into it, and my last few cardiology checkups have been completely normal. I hope one day my son’s will be too. I’m pretty sure I used to have a bit of scoliosis as well, and I technically have a high palate and front teeth that go out a bit too far, and some crowding of my teeth. My pinkie toes are pretty crooked, too. My mom told me that they considered cutting them off, but maybe she was joking? But honestly, overall, I have it pretty mild, and everything that my mom and the doctors did really helped me to manage what was manageable so that now I have a fairly regular life.

  • Generations of Marfan: Part 1
    One thing I really hated was having my eyes dilated. Sometimes we had to do it days in advance, and I remember being about four in Quebec, staying at my aunt’s house in Montreal, being held down so that my mom could put the drops in my eyes. It was awful! I vaguely remember having braces and casts on my legs when I a preschooler as well, because my legs were so crooked. But other than that, I don’t have a lot of early memories of dealing with it – it was just a part of life. What will Obsidian remember? Being a YouTube star, of course!

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