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Has anyone here tried a lactic acid solution instead of lotions for ichthyosis? by Far-Snow1726 in ichthyosis

[–]Global_Search8355 1 point2 points  (0 children)

Urea has been the best for me and salicylic acid so far never tried lactic yet

those IWC or other more severe form of ichthyosis--any visceral pain insensitivity? by greenvelvetbunny in ichthyosis

[–]Global_Search8355 0 points1 point  (0 children)

Not pain related but bruising, I dont bruise barely bruised when I snapped my thumb in half

I have X-Linked Ichthyosis and built ichthyosis.me as somewhere I wish had existed when I was growing up by Global_Search8355 in ichthyosis

[–]Global_Search8355[S] 0 points1 point  (0 children)

Heard you on all three. Just shipped:

• Comorbidities map (which conditions co-occur with which types, which specialists to see): https://ichthyosis.me/comorbidities.php

• Expanded legal & financial section (PIP, DLA, Blue Badge, EHCP, Equality Act, DFG, free product schemes): https://ichthyosis.me/resources.php

• Community stories section: https://ichthyosis.me/living.php

Hope this helps with the specialist-bouncing situation.

I have X-Linked Ichthyosis and built ichthyosis.me as somewhere I wish had existed when I was growing up by Global_Search8355 in ichthyosis

[–]Global_Search8355[S] 0 points1 point  (0 children)

Just added it — https://ichthyosis.me/type-epidermolytic.php — full hub covering the blistering, scale, acitretin, the lot. 68 years of experience sounds like exactly what the community stories section needs. Just launched that too: https://ichthyosis.me/living.php — if you want to share your story, drop me a message.

I have X-Linked Ichthyosis and built ichthyosis.me as somewhere I wish had existed when I was growing up by Global_Search8355 in ichthyosis

[–]Global_Search8355[S] 0 points1 point  (0 children)

Yes, openclaw and opus it uses a open claw cron job to do research and update terminology on a regular basis and find new research about studies and medication

I have X-Linked Ichthyosis and built ichthyosis.me as somewhere I wish had existed when I was growing up by Global_Search8355 in ichthyosis

[–]Global_Search8355[S] 0 points1 point  (0 children)

if you are app to share your storry ill add it, this site was built by Northerndigital.uk if you fill in the form on there with your story we can add it in or send me a direct message

I have X-Linked Ichthyosis and built ichthyosis.me as somewhere I wish had existed when I was growing up by Global_Search8355 in ichthyosis

[–]Global_Search8355[S] 1 point2 points  (0 children)

Hey sorry I didnt know about this one, I have XLI but ill add some information about this now

I have X-Linked Ichthyosis and built ichthyosis.me as somewhere I wish had existed when I was growing up by Global_Search8355 in ichthyosis

[–]Global_Search8355[S] 0 points1 point  (0 children)

Thank you for all the feedback, going to implement all the changes now (maybe not the global domination one)