Syndromes Without a Name (SWAN)
- heathermason
- Feb 12, 2024
- 1 min read
On day 12 of our rare disease initiative, I have made a change to the format, to cover something that I feel completely necessary to highlight in the lead up to Rare Disease Day.
I want to acknowledge the amount of families who still do not have a diagnosis. We have heard from our previous stories, that not having a diagnosis can be the most difficult part of the journey for rare disease individuals.
The charity SWAN UK estimate that 30-50% of children with severe learning disabilities may never get a diagnosis. For me, this was a staggering statistic!
However, there is hope around the corner for these families.
If you or someone you know are struggling to find a diagnosis. Reach out to one of the associations dedicated to SWAN Syndrome, provided at the end of the article.
As always, please share the article; it may just help one person who is looking for answers. Be part of someone's solution.
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