Patient Worthy

3 hours ago

During Rare Disease Month, Patient Worthy is honored to share Diana's journey.
Having a rare disease has been devastatingly life-altering. I went from being an aircraft mechanic, OTR driver, and most recently, in 2020, a caregiver when the disease manifested violently during COVID. For over five years and counting, I have been completely bedridden. My proudest roles as a wife, mother, daughter, sister, and Mamaw have all been affected because of my limitations. As someone who has always taken care of her family, I am no longer able to provide for them now.
Since discovering my condition, I've learned that this disease has manifested itself over a lifetime, and since COVID, it has become more aggressive and detrimental to my health with new conditions emerging in a matter of months. Not enough doctors know about rare diseases, but I was lucky enough to have found doctors that advocated for me. One in particular ran tests, talked to other doctors in various fields, and simply took the time to talk to me. Not everyone gets that luxury, and I am so thankful.
Having a rare disease has also taught me patience, understanding, and forgiveness. I did have these before, but not at the depth I do now. It has also given me time—time to spend with my husband, something I rarely had before. Time when my grandbabies come over to lie in bed and cuddle while watching a show. Something I would miss doing if I were still a workaholic.
I have learned that we are our own best advocates. Make sure your voice is heard. Take notes, keep a journal, and use a calendar so that you can document your symptoms, your feelings, and questions you think of at any given moment. Please ask your questions! This is about your health.
I have a rare disease. I still have dreams that one day I can get up and move without being in pain every moment. My hope is that more knowledge and resources are spread and made accessible to those fighting this battle with me.
#rarediseasemonth #raredisease #rarebutnotalone #WeCareAboutRare #SHAREYOURSTRIPES #shareyourstory #PatientWorthy ... See MoreSee Less

Patient Worthy

4 hours ago

Idiopathic Intracranial Hypertension (IIH) is more than “just a headache.” It’s a rare neurological condition where pressure builds around the brain without a known cause — impacting vision, mobility, energy, and daily life. Many people with IIH fight silent battles with pain, uncertainty, and misunderstood symptoms every single day.

Meet Mckayla who is diagnosed with Idiopathic Intracranial Hypertension. Patient Worthy is honored to share her story during Rare Disease Month!

"Hello, my name is Mckayla Rees and I'm 18 years old. I love gaming and hanging out with people. I have idiopathic intracranial hypertension which is a build up of spinal fluid in your head. I've had a lot of symptoms like headaches but I've learned it gets better. My disease means trying even though it's hard."

#RareDiseaseMonth #RareDisease #RareButNotAlone #WeCareAboutRare #ShareYourStripes #ShareYourStory #PatientWorthy #IdiopathicIntracranialHypertension #IIH ... See MoreSee Less