Jesse Shares Her Loeys-Dietz Syndrome Story

 

IMG_5762My name is Jesse and I’m a 32 year old Mom with Loeys-Dietz Syndrome. LDS is a Marfan-like connective tissue disorder that effects my entire body. The connective tissue around the aorta and other blood vessels is weaker. Learn more about LDS here http://www.loeysdietz.org/en/

The biggest complication and fear of mine is aneurysm and dissection of those vessels. I am lucky to have a mild case of my disorder and was blessed to be able to get pregnant when we thought it would be too risky before.

After I gave birth. Not just because I became a parent but because it was extremely tough on my body. I developed more and more chronic pain, and I suddenly had a myriad of stomach issues that made it increasingly hard to eat enough throughout the day. I was fainting more often as well and lost what little energy I had.

I’ve always known I had it but was told all my life it was marfan syndrome.

Even knowing all my life I’ve had a connective tissue disorder, I found it a bit difficult to learn that what I had was something very similar but a little more rare. I was part of a research study to find genes associated with these disorders. Because of the people in that study, a few more genes were discovered and a whole new disorder was discovered, Loeys-Dietz Syndrome.

Before, I’ve had days, weeks, months where it was hard to just get out of bed. Through so much hard work, I’ve kicked almost all my meds and can even exercise now! I’m doing very “normal” things and would even consider myself active for once in my life. I still have many doctors appointments, I get tired more easily than others and still have pain most of the time but I’m feeling way better these days. Even through some pain and trouble eating, I am able to do my house work, play with my son, help out at his school, and go hiking with my husband.

The most challenging thing is my life expectancy. My father and grandfather both died in their mid thirties. Doctors say I have a good chance to live till I’m 70 but this disease is often unpredictable. I don’t want to leave my son without his mom and my husband without his wife.

Do you find that you can keep up with others? Nope. But since doing physical therapy this year and starting to be active, I’m finding it easier. I’ve never been able to keep up with my peers, even as a child. I was kept out of gym class and was always lagging behind everyone physically.

What would you tell others living with your diagnosis? Don’t give in. Don’t give up. Even with restrictions you can fight to keep your body healthy. Fighting by getting off excess medications. Fighting by going to physical therapy to help with pain. Fight back against the weakness and pain. Giving in and not living your life will only make things worse. Movement helps pain. Distractions help us mentally from the stress and depression that comes along with chronic illness. Take pride in every little victory! Life is more challenging for the chronically ill. So those little victories are much bigger for us.

What would you like to tell others that don’t live with a similar diagnosis? Be kind always. You don’t know what someone is living with unless you’re them. My disease is often considered an invisible illness. I may look like a healthy young woman but I have a handicapped placard for my car. I have long, working legs so most people assume I am just being lazy. You can’t see my bad heart. You can’t see a fainting disorder. So just be kind because that person that looks like a mess could be just getting out of the hospital or out of the house for the first time in a long time. We have enough to worry about and to be sad about. We don’t need to worry about what others might be thinking of us.

That I am stronger than I believed. I can do more than I ever thought possible.

I have tried almost vall the pain medications in the world. I have tried medicines to help me sleep and ones to help induce an appetite. Medicines aren’t always the answer. Through hard work and lifestyle changes, I’m achieving most of what those pills did for me WITHOUT the nasty side effects. Work hard and you’ll find something that helps. It’s worth it. I promise.

Thank you for sharing your story with me and with the world. Your persevering spirit rings true in your words. It’s amazing how illness makes us realize amazing things about ourselves like you said yourself Jesse, “That I am stronger than I believed. I can do more than I ever thought possible.”

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