Liste des hashtags les plus populaires par sujet #LAMELLARICHTHYOSIS

May is Ichthyosis Awareness Month so I wanted to re-share the blog post I wrote in 2017 about my skin for those who are unfamiliar with the disease. More importantly I want to share this again for those out there who also have #ichthyosis and don’t know anyone like them. Hi! ‍♀️ . . My drive to share these words and photos are obviously to raise awareness for such a rare and difficult chronic disease but to also remind people that it’s okay to be brave in this way. Your silent battles matter, too. I work really hard to stay up-beat and strong but the truth is I have tough, bad days. So does every single person on this earth. Talk about it. In order to invoke compassion, tolerance, and empathy in people they first have to be informed. By speaking up for yourself you’re providing the script for others to speak up for you in the same way. Never be afraid to give people permission to care about you . . Follow the link in my profile for more. Thank you for reading . . . #lamellarichthyosis #ichthyosisawareness #ichthyosisawarenessmonth #firstskinfoundation @foundationforichthyosis #homerowfiberco

#Ichthyosis is a challenge to live with and this summer especially I’ve been struggling with my skin. Could be the heat, could be my photosensitivity is at an all-time high, could just be the natural cycle of things, but either way, I’m repping the mermaid look pretty fiercely right now.‍♀️ . Are scales scary or are they associated with magic? I would like to shift the perspective to the latter ideal. . I’m trying to embrace my skin more publicly than I have in the past because I want you to know the maker behind Home Row. Hi I’m Rochelle - Born with Lamellar Ichthyosis, born with an itch to create (pun intended ), and utterly obsessed with all things of the magical/other-worldly realm. . I feel at home among the dragons, mermaids, elves, faeries, tree folk, mutants, witches and wizards. If you’re a maker/designer who also loves dragons and mermaids, thanks for creating/embracing things that I identify with. I appreciate you more than you know! . . . . #ichthyosisawareness #lamellarichthyosis #mermaidsmatter #handsthatknit #knittingismagic #craftrealmagic #woolandwoodmagic #homerowfiberco #rarediseases #skindisease #knittersoftheworld #foundationforichthyosis #firstskinfoundation #crafterswithdisabilities #knitterswithdisabilities #knittingismytherapy

I just wanted to say thank you again to everyone who commented on my blog post for Ichthyosis Awareness Month. I don't talk about my skin much and the amount of uplifting words and kind thoughts pouring in on my blog and other social media pages has left me pretty speechless. Thank you . . For those that haven't read the post and are curious about Ichthyosis, there's a link in my profile.

#transformationtuesday If you read yesterday’s post (probably unlikely, as it didn’t seem to be much of a hit ‍♀️) I told you that today I’d show you a #beforeandafter highlighting the magic of retinoids. Well...voila! This is a truly remarkable woman who I met earlier this summer at a meeting of the Foundation for Ichthyosis and Related Skin Types (@foundationforichthyosis). She has a rare condition called autosomal recessive congenital ichthyosis, often referred to as lamellar #ichthyosis, in which the skin is very dry and scaly. As you can see, the scaliness of her skin had caused pronounced out-turning of her eyelids, known as ectropion, which, not surprisingly, was causing her quite a bit of discomfort. I told her that I thought that I would be able to help at least a bit, so after the meeting she made the trip to see me. After discussing the different options, we decided to start a strong topical retinoid gel for her face, as well as an oral retinoid. She sent me the bottom photo about a month into treatment. That’s right - just a month! Needless to say, she is super happy with the results and so am I! I absolutely can’t wait to see her in person soon! #magicofmedicine #ichthyosisawareness

Jackson’s friend, who was thought to have bad eczema all along, has just been diagnosed with Ichthyosis Vulgaris. Welcome to the family Roman and Gena • When someone posts in the ichthyosis groups that there is a new baby born with #ichthyosis , I don’t feel sad for the family or the baby as some people may. I get excited that social media has helped bring us all together so that they are not alone in all of this. One lady just had her second baby with #lamellarichthyosis and she posted a picture of the two of them and said “why break the mold when we got it right the first time.” I just want people to understand that when circumstances happrn to you or your family, you become ok with them. You accept them and find the joy in them. She’s excited that she has given her visibly different son an understanding friend for life. That’s why it’s upsetting when people are adamantly asking “there’s nothing they can do?” “That’s awful, I’m so sorry.” It’s not awful, it’s our reality. Sometimes it sucks, yes, but we love our children and see them as a blessing and are thankful that they are ok. We don’t focus on the negatives. More people born with it means more friends, who just get it, for my son. More siblings who understand what it means to be a protector of their affected brother or sister. More parents to reach out and who you don’t have to explain everything to. Instant family! Our community is growing and it excites me for the future. #ichthyosis #lovetheskinyourein #thisiswhyweadvocate #growingfamily #ichthyosisvulgaris

I know I don’t post much about Carters progress but everyone needs to see this. We have incorporated homemade cannabis salves and lotions into his skincare routine and the results have been unbelievable. His entire body is almost scale free! He still cannot close his eyes, his surgery was unsuccessful and we have still been unable to find a specialist to take him on as a patient because of his age. I know there is a lot of controversy about cannabis use with kids and I’m sure I’ll receive some backlash for choosing this method but cannabis has been literally changing his life and I’m so excited I could burst. I’m not gonna sit here and try and preach cannabis is a cure but it sure as hell has become the best management system for us. #LamellarIchthyosis #IcthyosisAwareness #CannabisHeals #ItsJustAPlant #MoreThenGettingHigh #CannaCommunity #CarterGrey #LovingCarter #420Nurses

Sooooo... I did a thing. I’ve been wanting to shave my head for a long time now. I’ve needed to actually with my skin disorder being so difficult to treat on my scalp (swipe to see before and after). With Ichthyosis you can’t sweat, and when your skin can’t breathe infection is always a worry. Not to mention my skin is painfully dry and itchy as hell. . My head feels so good now that I can treat it, and therefore I feel SO GOOD! I did this for me so I can feel better physically, but I also did it to prove to myself that I don’t need to hide behind hair to feel prettier, more feminine, or more confident. Hair is not where beauty, femininity, or confidence comes from. I know this. If anything I feel those adjectives more deeply now that my hair is gone. . As an added gesture, a woman I care for is bravely facing terminal cancer, and if she loses all her hair during radiation I’m already supporting her in this way, too. . Self-care, and self-love, has many forms. Don’t be afraid to pursue them! Now, what’s your favorite hat pattern to knit? There’s two feet of snow outside haha! . #ichthyosis #ichthyosisawareness #lamellarichthyosis #thisiswhatselfcarelookslike #womenwithshavedheads #knitallthehats

This little boy is seriously my whole life, everyday I can’t believe how blessed I am to have such an amazing kid. I’ve never met ANYONE more resilient or loving then him. I feel so honored to be your mom booger ❤️ #CarterGrey #LegalizeDontCriticize #LivingWithLamellar #LamellarIchthyosis #IcthyosisAwarenessMonth #FightForSomething #BeTheChange #Advocate #MommasBoy #MommasWorld #LovingCarter

Als klein meisje ging ik door het leven met korte haren. Ik wilde heel graag lange haren, maar mijn mama vond dat moeilijk. Moeilijk omdat lange haren zouden plakken tegen mijn ingesmeerde huid, met vettige haren als gevolg. Om dit te vermijden ging ik als ‘halve jongen’ door het leven. Als ik echt lang zeurde, mocht ik bij de kapper een (kort) carré coupke vragen en kon ik haarbanden dragen om ervoor te zorgen dat de haren niet in mijn nek of gezicht kwamen. Maar goed.. Ik was een wildebras eerste klas, dus op zich stond dit kapsel wel bij mijn klein persoontje. Toen ik groter/ouder werd, mocht ik hier zelf over beslissen. Vanaf dat moment zijn de woorden ‘ik wil korte haren’ nooit meer over mijn lippen gegaan bij de kapper #mylifewithichthyosis#ichthyosis#lamellarichthyosis#skincondition#skindisease#shorthair#kid#wildkid