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.
I have been genetically diagnosed with a rare disease called Ehlers Danlos Syndrome. This is a connective tissue disorder and there is no cure or actual treatment. My joints constantly pop out of place and I have to wear braces or tape my body to keep them in place. The connective tissue in my organs and blood vessels breakdown and cause weakness. I also have a syrinx in my spinal chord the full l
Thank you to Lucas's mom for this amazing brochure. I have joined forces with his incredible family on the journey to fight for awareness, early diagnosis, proper emergency protocols, and patient support for life threatening connective tissue disorders and genetic aortic conditions.
Lucas and his story touched me from the moment that I heard it. Little did I know that I already had some connections with his family. This just made it more important for me to work on a "Lucas Project".
Loey Dietz is a connective tissue disorder similar to Vascular Ehlers Danlos, KEDS, and Marfan Syndrome. It is crucial that these disorders be diagnosed as early as possible to prevent these tragic life threatening events. Awareness is everything!
If you suspect you could have one of these disorders see a cardiologist immediately to have an echocardiogram while waiting for a genetics appointment. Please do not settle for just an EKG! Most of us have a normal EKG. That does not mean there is not an underlying issue.
More information on our action plan will be coming soon!
#19 we got you!
Ehlers Danlos Syndrome - Day 20
POV: Living With EDS or HSD
I love traveling and refuse to give it up. Whenever I go on vacation I have to roll with the punches that my body throws at me. I refuse to miss out on life because of EDS. I have just learned that things will not always go as planned and that is OK.
This was my vacation last summer exploring my culture and family history in Peru. Though I had rough moments medically I was blessed to get to know so many locals that embraced me and made me feel like family.
Anna took care of me that day. She would not leave my side. She asked about why I was sick and told me about all her goals to be a police officer. She made sure that no one bothered me and gave me tons of hugs. We learned all about each other and played with her dolls. Anita you made everything better and my day magical. You will forever be in my heart!!!!!
My main POV is you only live once. Never give up on the things you love. Just adapt them to fit your needs
What is your POV?
Use a trending “POV” (point of view) format to share a relatable, educational, or light-hearted moment from your experience.
Please tag if you would like me to share it on my page.
05/21/2026
Ehlers Danlos Awareness Month - Day 19
One Boundary I’ve Learned to Set
Setting boundaries protects your health and energy. Share one boundary that has helped you grow.
One boundary I have set is to not allow EDS to define me or steal away my life. I still have my struggles that I can't control. However, I will not allow it to control every aspect of my life. In order to accomplish this goal I surround myself with people that understand when I just can't. Those people are the ones that deserve my good days. They all give me the motivation to live my life to the fullest. I will admit sometimes I am guilty of pushing to hard, but that is because I do that for myself. Never let anyone (including yourself) make you feel less because of chronic illness. Also, make a promise to yourself to always work hard.
Please tag if you would like me to share it on my page.
sofiashelpinghand
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.
Please tag if you would like me to share it on my page.
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
05/17/2026
Ehlers Danlos Awareness Month - Day 16
My Type, My Experience
I have a vascular type of EDS diagnosed with a gene that is still being researched, the MYLK gene. I was originally suspected of having Marfan Syndrome despite not having the tall stature because I had many of the clinical complications. As I have gotten older I have fallen more into the vascular complications of EDS. Last month I was rushed to the emergency room and hospitalized for my first rupture, I have aortic and heart valve involvement, syrinx, scoliosis, pectus, bad eyes, severe anemia (requiring infusions), bruising, very visible veins, POTS, MCAS, bad feet, and a 9/9 on beighton scale among other things. My mom is also diagnosed with multiple surgeries, organ loss, severe anemia, and lung complications. A couple weeks ago my family and myself went into genetics to do a very detailed workup to see if new things were found since I was tested over 5 years ago and my family did not originally go through full workup. I am hoping for more answers or to at least help science have more answers. In 2019 the MYLK gene was added to the connective tissue panel without a real known understanding of where it goes. Maybe another EDS subtype or a new connective tissue classification is in the future?
*Some General MYLK Knowledge*
MYLK gene mutations are increasingly recognized for causing a heritable thoracic aortic disease (HTAD) that overlaps significantly with Ehlers-Danlos syndrome (EDS), particularly vascular EDS (vEDS). While not currently a standard, "named" subtype of EDS, MYLK (Myosin Light Chain Kinase) is included in comprehensive connective tissue genetic panels to identify patients with vascular complications and joint hypermobility, as noted in a BCBSM policy document and a PubMed Central article.
Vascular Overlap: MYLK variants are primarily associated with thoracic aortic aneurysms and dissections (TAAD), which are also major features of vascular EDS (vEDS), similar to COL3A1 mutations, explain Medicover Genetics.
I hope to continue to work with the Marfan Foundation & Ehlers Danlos Society to push awareness and research for people like me!
05/15/2026
Day 15 – Wear
Friday, May 15, 2026, is global Day! A day dedicated to raising awareness of vascular Ehlers-Danlos syndrome (vEDS) and showing support for people living with this condition. To take part, simply wear red, take a selfie, and post it on social media using the hashtag .
What is vEDS?
vEDS is a genetic connective tissue disorder that causes the blood vessels and organs to be fragile and prone to tearing. The complications of vEDS can be life-threatening and include aneurysm, dissection, and rupture of the arteries and rupture of organs. vEDS may also cause a variety of other symptoms, including extensive bruising and spontaneous pneumothorax. vEDS can cause symptoms in many different areas of the body, so people with vEDS may require multiple providers in different specialties to manage their care.
Please tag if you would like me to share it on my page.
sofiashelpinghand
05/15/2026
Ehlers Danlos Awareness Month - Day 14
Something I Have Learned From Research
No two people with EDS are the same. I have also learned that we are still missing so many answers for connective tissue disorders. I honestly would not be surprised if there are a lot more subtypes and other connective tissue disorders. We need so much more research in these areas of medicine.
Day 14 – Something I’ve Learned From Research
Share a research insight that changed your understanding, gave you clarity, or gave you hope.
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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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Ehlers Danlos Awareness Month - Day 12
Thank a Healthcare Professional (Thank you Mello)
My favorite and most impactful healthcare professional was my athletic trainer and mentor, Mello, at my high school. I was part of the Sports Medicine National Honor Society and I learned everything about athletic training and physical therapy from him. When I wanted to play sports he learned about all my medical complications and went above and beyond by participating in the EDS ECHO program. He followed instructions from my doctors and helped me do physical therapy based on every issue that popped up. He went to every Marfan Walk bringing student athletic trainers and did everything to learn about connective tissue disorders and their complications. He never treated me like I was disabled and gave me the power to live a normal life.
Because of Mello I know that he is spreading awareness and will for sure help in early diagnosis in young athletes. Will be reaching out soon for my next project so get ready.
Day 12 – Thank a Healthcare Professional
Recognize someone who made a positive difference in your care, or share why medical education matters.
The EDS ECHO program provides expert-led education to healthcare professionals worldwide, helping improve diagnosis and care. Every share helps expand access to informed care. Learn more at ehlers-danlos.com/echo
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