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Living With PH and Connective Tissue Disease
According to https://my.clevelandclinic.org/health/diseases/14803-connective-tissue-diseases
“A connective tissue disease is any disease that affects the parts of the body that connect the structures of the body together. Connective tissues are made up of two proteins: collagen and elastin. Collagen is a protein found in the tendons, ligaments, skin, cornea, cartilage, bone, and blood vessels. Elastin is a stretchy protein that resembles a rubber band and is the major component of ligaments and skin. When a patient has a connective tissue disease, the collagen and elastin are inflamed. The proteins and the body parts they connect are harmed.”
Are you living with PH and CTD? What type of connective tissue disease do you have? Which disease were you diagnosed with first and how does one effect the other? Please share your experience with us.
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4 Replies
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Hi Coleen,
I have a co existing diagnosis of Ehlers Danlos Classical Type. I do believe this is the root cause of my PH. I’ve had many prolapsed organs, hiatal hernia etc. I originally sought diagnosis when my daughter (now 33) was 19-20 and having odd joints sublax or dislocation. Ribs, sternum etc.
When you live in your body as you see normal you don’t always realize it’s different. In retrospect there were many clues and symptoms they were just never connected. It is a genetic connective tissue disorder.
I was required to get echocardiogram yearly to assess my heart and major blood vessels around it. It was this yearly screening that picked up my PH last year after many years of normal echocardiogram.
Judie-
Judie,
I know some friends who also have EDS. I’m sure this didn’t help with the PH and the symptoms you were getting. That period of time where you are just being tested and running through test after test is so frustrating. Especially when things aren’t giving an explanation for what may be going on. But I am glad that they were finally able to figure out what was happening and help you get explanation for your symptoms. In a way, that must have been a relief for you especially because it helped you get some treatment for it. Does your daughter also have EDS-hypermobility? Were you genetically tested? I also have genetic conditions so went through a lot of genetic testing myself for other conditions that came back positive. -
@jady1958 you have been through a lot! I’m sorry that PH was added to your already complex medical conditions. It’s a blessing thought that it was diagnosed so that you can be treated and hopefully feel some improvement in symptoms. If I may ask, how has your doctor proceeded in treating your EDS and PH together?
I can relate to what you said about what you see as normal and don’t realize it’s different. For example, it’s been mentioned previously in our forums how a PH patient might not realize how much they need supplemental oxygen because they are so use to living with limited breathing ability. I can see this being similar to your experience with EDS and PH.
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I wanted to share this educational opportunity with those with connective tissue disease(CTD) and PH. PHA offers several videos as part of their PHA Classroom. I added the first one in the series so you can view it at your own pace.
Feel free to watch the videos and let us know your takeaways.
Did you learn anything new? Will you ask your healthcare team about what you’ve learned?
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