Sjögren-Larsson syndrome
Forum

Current topics:

• - Unusual skin allergies/sensitivities: Do you have one?
  I am allergic (or maybe I should say sensitive) to one of the most benign substances on earth - aloe. I discovered that about 50 years ago when I accidentally burned my hand when taking a pan out of t
• - 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
• - 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

Current topics:

• - 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
• - 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

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:

• - COVID-19 masks: Are you going to continue wearing a mask after you've had the vaccine?
  Hello everyone, I hope you're doing well. As the discussions continue on the end of the COVID-19 lockdown and social distancing measures, you may have some questions about the use of protective fa
• - COVID-19: How do you feel today?
  Hello everyone, I've opened this discussion so we can share our state of mind during this period of isolation! Let's come here everyday to share how we're feeling! What is the best way to stay pos
• - 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%