Do you feel like you’re still searching for the "right" treatment for your rare disease?

Do you feel like you’re still searching for the "right" treatment for your rare disease?
I’m new here! Hello!
I have lived with Fibromyalgia and Chronic Fatigue since I was 14 years old. I was recently diagnosed with CKD Stage 3A (which is scary to me), and a rare condition called Hypophosphatasia (adult onset). I am also immunocompromised and get sick almost weekly or every 10 days with something new. Hoping that being a part of a support community that can understand, will be an encouragement in my life. I am so weary of it all!
#weary #persevere #OnedayAtaTime #exhausted
How did you feel when you received your rare disease diagnosis?
I’m new here!
Hi, my name is Sami46. I've been diagnosed with anxiety depression social anxiety ptsd ocd osteoarthritis neuropathy ckd scoliosis muscular dystrophy diabetes.I want to know how others deal with there diagnosis and how it effects daily life.
#MightyTogether #Anxiety #Depression #Migraine #RheumatoidArthritis #PTSD #BipolarDisorder #OCD
True or False: I feel like my doctor listens to me and values my opinion.
I'm new here!
Hi, my name is SaudiWeezie. I'm here because
What’s in your rare disease “toolkit”?
I'm new here!
Hi, my name is jd2004. I'm here because
#MightyTogether #ChronicKidneyDisease #Cere bralPalsy
What helps you get better sleep?
What Questions Do You Have About PH1?