My Accidental Rare Disease Diagnosis (Part 2)This is the second article in a 2-part series. Be sure to check out Part 1: New Symptoms, New Fears: The Beginning...reactionscomments
A Journey to My Authentic SelfI have always strived to see the silver linings or the good in every situation. My immune deficiency diagnosis of hyper IgE...reactionscomments
Community Views: Navigating the ER as a Rare Disease WarriorLiving with a rare disease creates obstacles to healthcare. Specialist doctors understand rare diseases best. But sometimes, you need emergency care. And...reactions5comments
The Power of the Words We Tell OurselvesI didn't fully realize how much my physical health impacted my mental health until recently. Sure, I know I've struggled with depression...reactions2comments
SSI and Medicaid: Moving to a Place Based on Healthcare"What do you mean I'm not eligible for Medicare?" I groan into the phone. "I'm on Social Security, aren't I?" At this...reactionscomments
Asking for Help and Applying for DisabilityEditor's Note: This article was written by Halimat Olaniyan and originally appeared on our partner site Sickle-Cell.com. I’m not very good at...reactionscomments
Grieving Loss in the Rare Disease CommunityRare disease communities provide a unique and much-needed benefit to their members. For many of us, it's through these communities that we...reactionscomments
When Illness Calls: A Tale of One Rare DiseaseAs a person with narcolepsy type 1, I am used to my life not looking like other people's. My average day with...reactionscomments
Tired of Doctors Calling Me UnusualI've learned a lot about the medical profession over the years and here in the west, they are trained to look at...reactions6comments
Coping With Specialty Medication MayhemIf you have a rare disease, you are probably aware of the struggle often involved in finding treatment for rare diseases. Even...reactionscomments
Mental Health and Having a Rare Disease Is a Double-edged SwordHaving a mental illness is a double-edged sword. If you say too much, you're a complainer. But if you don't say anything...reactionscomments
Finding a Support Person for Doctor AppointmentsPeople with chronic health conditions often face complex treatment plans and multiple doctor visits. Brain fog, fatigue, and problems concentrating are frequent...reactionscomments
New Year… Same Old Rare DiseaseThe holidays have finally passed. Now it is time to start preparing for the upcoming new year. Setting goals for personal improvement...reactionscomments
How to Deal With Tough Mornings and Chronic PainEditor’s Note: This article originally was written by Annelyse Andal and shared by our partner site Psoriatic-Arthritis.com. You wake up to the...reactionscomments
Finding Friendship in the Rare Disease CommunityWhen I was first diagnosed with a rare disease, I struggled to find a sense of community. Like many others, I had...reactionscomments
What Makes a Rare Disease Patient Advocate?Rare disease advocates are patients that have a story to tell and are willing to share these experiences with the world. Our...reactions2comments
Amy’s story: Let’s play a little game● Lift up your right arm, and now lift up your left. Lower them again. ● Tip your head up. Look up...reactions5comments
My Mental Health DiscoveriesContent Note: This article describes suicide. If you or a loved one are struggling, consider reading our suicide prevention article. Through my...reactionscomments
Coping with Grief During the Holiday SeasonEditor’s Note: This article was originally shared by our sister site, H-I-V-.net, and was written by Khafre Kujichagulia Abif. I can remember...reactions4comments
What Is the Social Health Network?Like our other Health Union condition communities, the Social Health Network brings people together to drive unique and impactful conversations about health...reactionscomments
