Date: 03/24/2021


  • Lamellar: Being able to make breast milk but unable to express breast milk. It just wouldn’t come out. The docs though it was blocked by skin. Both babies. So frustrating. But who knows. Some had success. So maybe just bad luck ????‍??
  • With all 3 of my babies I produced milk but because of the skin it couldn't express it so ended up with mastitis with all 3. I have lamellar.
  • I breast fed all my babies, but did get mastitis a lot. Never seemed to be able to pump much out.
  • I had two babies both breastfed. I didn’t have any problems feeding but did get mastitis with each. I have lamellar.
  • I have EHK and my son does too. I tried to breast feed but he sucked my skin off and rubbed the skin off his face in the process. I pumped, but once again the skin came off. I managed to pump for a couple of days and then stopped due to blood getting in the milk.
  • So frustrating. I pumped for hours a day, for 12 weeks but was only able to get up to 2 Oz per day. So exhausting. My boys are perfectly strong and healthy regardless. Thank God for that ??
  • Yes, it was the same. 2 oz maximum with an electronic pump. Lol when I got home I had a hand pump. What was I thinking? ?? I have a healthy 20 year old now. ??
  • I had the same problems.

A full resource sheet on breastfeeding will be availble shortly!

We asked our members, what other symptoms they had? Did you ever wonder if they were related to your ichthyosis?

  • I have rhinitis & allergy to perfumed products & cosmetics which is commonly associated with ichthyosis vulgaris
  • Cataracts, blurred vision, due to eyelids not fully closing and/lotions/creams around eyes.
  • I also have vision problems that have developed in the past year, a strabismus that causes double vision and chronic dry eyes caused by the skin around my eyes becoming so tight I can’t close them properly. Would be interested to know if anyone else has explored surgical options for eyelids or any other solutions to relieve the tightness/dryness. I use sceral lenses and constant eye drops and warm compresses to keep it at bay.
  • Rhinitis & allergic to perfumed products & cosmetics. I can't wear makeups whatever the brand it is. Only lipstick from specific brands
  • Are contractures associated with ichthyosis?
  • Yes because of the tight skin around joints.
  • Squinting with all degrees ( different eye problems due to dryness) and joint problems
  • And muscle shortness
  • And cardio issues like high blood pressure and heart rate due to intolerance of heat ??
  • Dry eyes, joint issues, oily hair and overheating
  • Chronic headaches
  • Main side effect is headache severe one
  • Thanks, headaches started long before the skin conditions arose.
  • Soft tissue being hard.
  • Tinnitus / hearing loss since age 32.
  • I think for sure my hearing is going.
  • Poor oral health
  • Headaches/migraines
  • Oral hygiene/brittle teeth
  • High heart rate
  • Light sensitive (some days i feel like a mole going outside in the sun. ??)
  • Osteopenia , low vitamin D levels and lung problem from breathing dander from skin
  • Low or deficient vitamin D was the culprit for my out of the blue depression, anxiety and sleep problems. They went away by themselves in 2 weeks after I took 8k iu of Solar Gem D3 with Omega3.
  • Vitamin D and a ( pill Turmeric with black pepper) glucosamine chondroitin HELPS WITH JOINT PAIN!
  • Hard to deal with when you also have melanoma.
  • I have had several 50,000 IU prescribe by my doctor, so now I take vitamin d 3 one in the morning and one at night.
  • Joint pain
  • Frequent headaches
  • Light sensitivities
  • Asthma
  • Hearing Loss
  • So many associated genetic deletions and syndromes so many things go back to this diagnosis
  • I’m an alcoholic
  • I get these heat bumps all the time. Like sweat trapped under my skin. Little clear bumps that can be popped with a finger nail. I get really hot really quick too.
  • Migraines
  • Allergic Rhinitis/Constant sinus problems.
  • Overheat when working out quickly/skin starts itching bad.
  • My EHK is definitely affected by hormonal changes - puberty, pregnancy, and menopause all affected my skin.
  • I had so many miscarriages...
  • Allergic to NSAIDs
  • Having multiple auto-immune diseases can be tricky.
  • I think the worst is the acute inflammation measured in my blood, it scares my doctor who does his best to keep up. I now have a problem with the joints in my fingers swelling but I do not have arthritis. I also have Raynaud Syndrome so paronychia happens a lot since my skin breaks around the cuticles on my fingers and toes. The poor blood circulation means I do not heal easily and I have multiple infections yearly.
  • My Ichthyosis vulgaris has worsened with age. It is appearing on my face now and coming out in keratosis wherever there is a small amount of sweat.
  • Try Gelatin and /or Collagen. It provides moisture to the whole body and skin. Chinese herb dendrobium also provides skin moisture, research on its benefit. Topically you can rub Vegetable glycerin on Wet skin after bath or add some to your daily moisturizing lotion.
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