Anne’s Substack
Strong and RareHere I plan to write my story about my journey with Stiff Person Syndrome, what it's like living with a rare condition and how I survive day by day.
| Platform |  | Pricing | Only free issues | Publishes | Weekly |
|---|---|---|---|---|---|
| Issues | 48 | Subscribers | Read | raisiebay.substack.com |
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Latest Issues
Recent posts by this newsletter. Browse the email archive.
Is it Neglect?
I’m a disabled Mum. I wasn’t always disabled, my youngest three children were four seven and nine when I got sick. Before that we had such fun, we were always at the park, baking, crafting, playing games, going out, we had a blast. But then...
How the scIG is going!
So, after three sessions at the hospital teaching me how to stick needles in my stomach and administering a pump full of immunoglobulins into my skin, I was sent a huge box of equipment to do this at home.
Misunderstood
I know since getting sick I’ve had a little trouble with communication. Writing things down is more helpful, I’d rather an e-mail than a telephone call.
I Had a Dream, well My Daughter did
My 17 year old daughter was telling me about a dream she’d had. She said we were all walking to the primary school. We walked down the steps and along the canal, which comes out by the road opposite the school.
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Authors
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I have Stiff Person Syndrome, the same as Celine Dion, and I also have five kids (four ASD) and two cats. This is my life, how I deal with this debilitating condition and continue to care for my family.
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