Sofia's Helping Hand
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This is a charity organization that was started by Sofia when she was 13. When hearing her diagnoses The doctors think that this could be part of my EDS.
05/21/2026
Ehlers Danlos Awareness Month - Day 18
What Rest Means to Me Now
Rest is so important but I will be honest I still struggle to rest they way I should. Therefore, I kind of just pass out everywhere. I don't feel rest is weakness I just keep pushing when I can. This is not something I would advise to other people and this is something I have to continue to improve. I do know that rest is so important and not resting causes you to crash out like I obviously do all the time. I am constantly having the battle that there are not enough hours in the day.
How has your understanding of rest changed over time?
Is anyone else as stubborn as me and just needs to learn to rest.
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sofiashelpinghand
Ehlers Danlos Awareness Month - Day 17
A Message to Someone Newly Diagnosed
My number one piece of advice is to build community. No two zebras are the same but we all have had similar journeys of disregard, frustration, and the feeling of being misunderstood. Having community has given me strength since the first day of diagnosis.
My other main piece of advice is to never stop moving and never let Ehlers Danlos define you.
There are many connective tissue communities out there. You can DM me if you need information or your child wants to get involved.
There are also excellent resources danlos (all types of EDS)
(vascular EDS)
(all connective tissue disorders involving vascular & cardiac involvement)
(Loey Dietz Syndrome)
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sofiashelpinghand
Ehlers Danlos Awareness Month - Day 13
Living With Comorbidities
Many people in our community live with comorbidites. Comorbidities are health conditions that occur alongside a primary diagnosis. For people with EDS and HSD, these can include a wide range of issues affecting many different systems in the body, such as the heart, nervous system, digestive system, immune system, and mental health.
They can add complexity to daily life and make diagnosis and treatment more challenging but understanding them is key to getting the right care and support. Share one and how you manage it in a way that supports your well-being.
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Miami, FL
