Undifferentiated Autoimmune Connective Tissue Disorder is a term used for when signs and symptoms of one or more connective tissue disease are present- for me, think lupus, scleroderma,
antiphospholipid syndrome and Sjogren's all rolled into one- but laboratory tests don't fit you into one particular catergory.
It recieves depressingly little social media or news coverage.
Comparatively, to hold up what social media considers a rare condition, one which recieves a LOT of coverage: 1 in 5,000 people have hEDS or 1 in 40,000 have cEDS.
1 in 50,000 have UCTD, and because UCTD is an umbrella category, every patient has a different 'cluster' of issues.
Generally people with UCTD don't have severe organ damage, nor do they have neurological involvement but lungs are more lightly to be scarred by it.
Unfortunately I like being different. My second flare, in early 2024 gifted me with epilepsy. My liver and kidneys were also damaged, and my oesophagus is scarred.
My connective tissue is particularly bad in my spine, meaning I have an aquired Chiari 1 malformation and something that's a lot like scoliosis but nobody's really explained it to me.
An antimalarial drug called hydroxychloroquine acts on the immune system and keeps it from acting up on your organs. It's usually used for lupus.
I got on it in late 2024. I am now out of my wheelchair and back in full-time study. Most of the damage has healed but some is permanent.
It took seeing three seperate doctors- all who agreed on UCTD- to agree to try something rather than wait for it to "define" into something else- which may never happen.
Given the state of my liver I may well have not survived waiting that long.
Hydroxychloroquine has been a miracle drug. But it's not that simple. I'm still at risk because of the lack of general knowledge about UCTD.
Because I don't have a set diagnosis of any one connective tissue disease:
- I am not eligible for clinical trials for my condition or pain or anything else.
- I can only be given one sort of medication, hydroxychloroquine (Plaquenil for you americans), and not any other treatment options.
- This medication could make me blind. If it does, it will be stopped, and I will be left without treatment.
- I am not eligible for steroids even if i should be in critical condition because of autoinflammation.
- I am not able to apply for support groups, advocates or grants for myself since none exist.
- I am not eligible for antiocagulant therapy until I have a severe blood clot despite having had mini-strokes.
How can you help?
- Be UV sensitivity aware! If you feel sick after being in the sun for too long, imagine feeling that in a room with flourescent lights,
or after going for a short walk. I have to cover up. Weird comments are weird. Telling me I 'need a bit of sun' is weirder.
- Learn seizure first aid. Don't put a spoon in my mouth. I'm not going to swallow my tongue. There are five-minute courses on it.
-If you're a chronic illness content creator, I beg of you to remember that EDS is NOT the be all and end all of connective tissue disease.
I see an awful lot of people being talked over by creators who don't want to agknowledge that.
-If you're a healthcare professional, think connective tissue disease. It took me a long time to even see rheumatology
because I was considered 'too young' to need the service. Autoimmune disease
doesn't discriminate by age. Unfortunately. You can be smited by it on any random day.
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