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Loeys-Dietz Syndrome-instead of IBS/Crohn's

I have had GI issues all my life. I've also had other health issues- allergies, asthma, and I hurt, especially when a storm or a cold front was coming in, among other issues. I was always sick as a child. I had Covid last May, that attacked my body and started causing serious problems.
My feet became swollen, and as a result, I was given an echocardiogram to check my heart. A CT scan was also done. I now have been diagnosed with two aortic aneurysms, and combined with all my other symptoms, my doctors and I are certain that I have Loeys-Dietz Syndrome. I have siblings that I know have it and I am sure my son has it too. This is a chromosomal defect on the 6th chromosome. There are 5 genes associated with it. A gene is either missing a little piece of it or it broke and didn't fuse back together correctly. It causes many issues, including autoimmune disorders.

NOTE: -------- One of the symptoms of LDS is diarrhea, off and on, that never goes away. I had been diagnosed with severe IBS/probable Crohn's many years ago.

The biggest problem is the aortic aneurysms. Loeys-Dietz is a close cousin of Marfan Syndrome. If an aneurysm blows, that person is unlikely to survive. One of my aneurysms is minor, the other is major, and I most likely have heart surgery in my future. Nobody likes the idea of serious surgery, but I want to live many more years.
This is a very rare disease. Once things open back up, I have to go to UNC-Chapel Hill and get a genetics test. Only a few places in the US test for this.
While I am NOT SUGGESTING that anybody else has this, and I'm not trying to frighten anybody, I invite all of you to look at this site and see if you have these symptoms. Not everybody has all the symptoms; my sister has scoliosis and her eyes turn out, but I don't. My son's eyes turn out, and mine don't, but he has the pain that I have- which is a connective tissue disorder: https://rarediseases.info.nih.gov/diseases/10788/loeys-dietz-syndrome
If you feel that you have any of these symptoms, please talk to your doctor. Do not try to self-diagnose this; this is something that needs to be done by a health care professional.

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