Michelle Myers, a mother of seven and American citizen who has never been out of the country, suffers from a rare disease that causes her to wake up with different…
16-year-old Teenager Ciara Micks of Limerick, Ireland, tries to remain positive despite an unsettling situation regarding next steps to treat her EDS, Ehlers-Danlos Syndrome, reports Limerick Leader. Ciara deals with…
According to a new study, people who suffer from rare disease are more prone to suffer from levels of anxiety, depression, pain and fatigue. The findings are proof that special…
The Green family is trying to raise money for their daughter's life-saving surgery and it's now becoming a race against the clock. 18-year-old Ylena Green is suffering from Ehlers-Danlos Syndrome,…
It had never even crossed my mind that there was a connection between my bruised skin, clicking jaw, Sally Hansen's strengthening nail polish, the blue skin on my hands in…
Si usted o alguien que usted conoce tiene síndrome de Ehlers-Danlos (EDS), usted probablemente sabe mucho sobre él, que te hace parte de un grupo muy pequeño. No mucha gente…
Rebecca Wanosik was already a pro when it came to being a mom. Zedyn was her fifth child. She knew to trust her gut when, three weeks after her baby…
Raise your hand if you like Adele, the English singer-songwriter! Well, hopefully, your hand is raised, but if not, that’s okay too. I’d still like you to consider Adele’s actions…
As I was reading a post about Ehlers-Danlos syndrome on Stanford Medicine's Scope blog, a particular line caught my eye. The author of the post writes about "the moment [EDS patients] open our eyes…
Did you ever get that weird feeling when you've arrived at the party, but almost all the guests have already departed? Yes, you are definitely late, late, late. That's how I feel…
Ehlers-Danlos syndrome (EDS) is incredibly diverse in its symptoms, and most of the time patients don’t have all of them at the same time. Additionally, it’s a spectrum condition so…
Anger. Who doesn’t get angry? From big to small stressors in life, there are far far far too many triggers to choose from that can set us off. But, what…
We are back from Rare Disease Week in Washington, DC! And do we have some highlights for you below?! Rare Disease Day at NIH was not only informative, but encouraging.…
Con enfermedades raras, hay mucha información que es desconocida o misteriosa para el público en general, los pacientes, e incluso los médicos. El síndrome de Ehlers-Danlos (EDS) es un grupo…
Si usted vive en Connecticut, y sucede que tiene una enfermedad rara, se están haciendo esfuerzos para ayudar a que su voz sea escuchada. Cuando usted es uno de muy…
La enfermedad y la depresión. Con demasiada frecuencia, después de haber sido diagnosticado con una enfermedad crónica, los pacientes se dan por vencidos. Se retiran. Ellos dejan de intentarlo. Ellos…
"Me gustaría que la gente simplemente tomar cinco minutos para buscar el síndrome de Ehlers-Danlos para crear conciencia." Estas son las palabras de 15 años de edad, Mya Lilly Hurst,…
It has been said that there is strength in numbers, and we are much stronger together! That’s probably why I connected with Shira Strongin, a young teen who lives with…
It's Frida-yay Everyone! Celebrate it by catching up on this week's Editor's Choice. 'Tis the season of giving and we have a heartbreaking story on a case of gastroschisis that will…
If you have Ehlers-Danlos Syndrome (EDS), life can get a bit complicated. Between doctors not knowing what you have to trying to figure out what treatments to use, it can…
Happy Thanksgiving Patient Worthians! We hope you are recovering from big meals and continuing to spend time with family this weekend. Editor's choice this week focuses on gratitude expressed by our…
Recently I was asked to write a piece about what I am thankful for this Thanksgiving. My first reaction was, "Oh God, Thanksgiving is actually here again?" I don't have…
Si las enfermedades raras estaban participando en un concurso de belleza, donde la "belleza" significa "poco conocido", "mal entendido", y "casi imposible de diagnosticar" -Ehlers-Danlos (EDS) sería a la altura…
Rare disease mom Bobbie recently had a new baby. While she is overjoyed at the latest addition to her family, she is fearing for her baby daughter's life. Her family…
How would you respond if your body did not work for you but against you? What if you felt that your body was actually your enemy? For people with Ehlers-Danlos…
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