Pelizaeus-Merzbacher disease
Forum

Current topics:

• - How were you diagnosed with a rare disease?
  Hello everyone, How are you doing? I thought I'd create this discussion to talk about being diagnosed with a rare disease! For some it can be a long, arduous process, and for others it can go quickly
• - Living with Usher syndrome: Share your experience!
  Hello, am new here. I have usher syndrome and have been registered blind for quite a few years. Also have glaucoma which has closed down one eye and affected central vision in other eye.  I manage q

Current topics:

• - Difficult Diagnosis
  I have been going to my GP for 3 years complaining about the same hormonal issues.  I have recently had horrific headaches and vision issues lasting over a month. I have kicked off and practically b
• - Gout - Allopurinol and side effects?
   My partner has been living with the condition of gout long term alongside with autoimmune, heart and many other diseases. Obesity has been a life time battle but after a serious attack of gout the h
• - Alpha-1 Antitrypsin Deficiency - Have you been diagnosed?
  Hi is there anyone with alpha 1 d t on here