Lovely day cycling at Cardiff Bay Pedal Power Cardiff #accessibility #recumbenttrike #superficialsiderosis SSRA | Living with SS

🆕️🔓Case report 🧠 Progressive superficial siderosis despite complete remission of intracranial hypotension symptoms following epidural patching.

✍️ Ian Carroll, MD MS & WouterSchievink

💚 SSRA | Living with SS #SuperficialSiderosis #spinalCSFleak
…adachejournal.onlinelibrary.wiley.com/doi/10.1111/he…

One year check up since having my #cochlearimplant switched on. #lifechanging #superficialsiderosis SSRA | Living with SS

Rhys lives with Superficial Siderosis a rare neurological condition he says that he would be lost without his parents' support as he is unable to work
samebutdifferentcic.org.uk/costofliving
#costofliving #costofliving help #energycost #risingcosts #nationallottery Rhys Holmes SSRA | Living with SS

An anniversary to remember. #cochlearimplant surgery #superficialsiderosis #Deaf SSRA | Living with SS so grateful to the lovely team at UCLH

Brilliant to speak at the online Joint Nations #RareDisease event yesterday. So inspiring to hear all the other speakers too.
#superficialsiderosis
📸Genetic Alliance UK

Rhys talks about his journey to a diagnosis of superficial siderosis and beyond. Explaining what superficial siderosis is, how it is caused, and how he copes with and manages some of the symptoms. #superficialsiderosis #rarediseaseday2024

youtu.be/n1S7pvT6q7c

#RareDiseaseDay

The story of Superficial Siderosis, the diagnostic journey, and the absence of a cure exemplify the critical need for increased support and understanding, encouraging a collective push towards innovation in care and treatment for all rare diseases. #RareDiseaseDay

By spotlighting conditions like SS, Rare Disease Day advocates for the millions worldwide facing the challenges of rare diseases, emphasizing the importance of research, healthcare access, and policy change to improve patient outcomes. #RareDiseaseDay

Rare Disease Day serves as a vital platform to elevate the voices of those living with rare diseases like Superficial Siderosis, fostering a global community united in the quest for recognition, proper diagnosis, and advancements in treatment. #RareDiseaseDay 2024

Deborah Hatch: Living with Superficial Siderosis livingwithss.com/deborah-hatch/ via SSRA | Living with SS #RareDiseaseDay

Jeffery Newholm interviews Wes Hale, a rare disease warrior ssra.livingwithss.com/blog/a-rare-di… #RareDiseaseDay #MyStory

Marfan’s + dural ectasia + infratentorial SS.

Anyone with luck finding subtle leaks or fistulas in these cases? Or really just the ectasia and nothing treatable?

No epidural fluid on T2 MR

Thanks

Just one more sleep until #RareDiseaseDay2024 which this is celebrated on 29 February this rare leap year! 🗓️ Faster diagnosis, better coordinated care, more awareness among health professionals, and access to treatment would improve the lives of millions ⁦Genetic Alliance UK⁩

Deborah Hatch: Living with Superficial Siderosis livingwithss.com/deborah-hatch/ via SSRA | Living with SS #RareDiseaseDay

1 week ago
@ataxia_and_me
#Ataxia
#Charity
attended the
Rare Disease Day
#Cardiff
#Wales
We were delighted to meet
Rhys Holmes

#SuperficialSiderosis

cc
@walesgenepark
Rare Disease Implementation Network
Genetic Alliance UK
(@RareBeacon)
#RareDisease

Did you know that it takes an average of 7 years to get an accurate diagnosis for a rare disease? In many cases, it may take much longer. Share this post to spread awareness for those who are struggling to find answers. Learn more about Rare Disease Day: go.globalgenes.org/RDD-2024

MRI with susceptibility weighted imaging (SWI) is the absolute champ at:
- seeing superficial siderosis
- identifying cases of suspected amyloid angiopathy
AND
- generating countless emails about findings of indeterminate or no clinical signficance

Do you include SWI on your MRI IAC protocol for the indication of asymmetric sensorineural hearing loss?

Superficial siderosis could be a cause that would be missed on other sequences.

Case courtesy Frank Gaillard via Radiopaedia.org doi.org/10.53347/rID-3…