Sjögren-Larsson syndrome
Forum

Current topics:

• - Welcome to the skin conditions group! Come say "Hello"!
  Hello everyone, I'm Courtney your community manager here on Carenity.  I thought I would open this group so we can share thoughts and experiences with skin conditions. So, what is your story? What is
• - How do you protect your skin in the winter?
  Hi, I know in my case with severe eczema winter is always the hardest time of year. I image it may be true for other skin conditions as well. How do you all protect your skin in winter? I try to take
• - Living with a skin condition: How do you deal with how others look at you?
  An unfortunate common complaint by those with skin conditions is that others may stare or make an ignorant or rude comment. Have you ever experienced stares or received negative comments from others?

Current topics:

• - Photo testimonial: Years of diagnostic uncertainty facing Ehlers-Danlos Syndrome
    Delphine's testimonialYears of diagnostic uncertainty facing Ehlers-Danlos Syndrome    When I was a child, I was already in pain. Back pain, stomach pain. I thought it was the same for everyon
• - What Natural Herbs/Supplements Have You Tried painful joints?
  Hello Carenity members, I have had numerous surgeries on my clavicle (in fact, I have the first ever done surgery on my clavicle and I am in some medical books - have basically very minimal of my ori

Current topics:

• - What can we do to stay healthy while stuck at home?
  I feel discouraged about my weight loss.  The best thing for me is the pool, but they are all closed. 
• - US Approves First RNA Interference Drug
  Alnylam’s Onpattro (patisiran) can treat a rare hereditary disease by silencing a specific gene. The first therapy based on RNA interference (RNAi) gene silencing has been approved by the US Food a

Current topics:

• - What is the most frustrating or difficult aspect of living with a rare disease?
  Hello everyone,  How are you today? As you already know, a diagnosis of a rare disease can have a huge impact on one's life. It can bring new insights and information, but also many questions, cha
• - 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! What were the first symptoms you experienced? How were you diagnosed? @A

Current topics:

• - Is a third wave of COVID-19 inevitable?
  Hello everyone,  How are you today? Many of us in the US want to turn the page and join together as a family to celebrate the festive season. But it's important that we not lose sight of what we a
• - COVID-19 vaccine: What do you think?
  Hello everyone, How are you today? The pharmaceutical groups Pfizer (USA) and BioNTech (Germany), as well as Moderna (USA), announced last month that their vaccine candidates are around 94 and 95%
• - COVID-19 vaccination campaign: Who is currently eligible for the vaccine?
  Hello everyone, How are you today?  Because the supply of the COVID vaccine is expected to be limited at first, the CDC has provided recommendations for federal, state, and local governments about wh