Список из самых популярных хештегов по теме #ICHTHYOSISAWARENESS

This week’s question is: What is your favorite thing about Edison having Down Syndrome? . I love that this is a question because I want to change the way Down Syndrome is viewed in our society. I want future DS mama’s to know it’s not scary and actually has been such a blessing on my life in so many ways. . One of my favorite things about Edison is how snuggly he is. Many children with Down Syndrome have hypotonia, meaning low muscles tone. Because of this, Edison is extra squishy and melts right into you. . I LOVE Edison’s smile and how when he is really happy his whole face disappears! He is full of joy and seriously delightful! . I love how Edison loves. It is uninhibited and priceless. His love knows no bounds, it has no prejudices and is perfect. I feel that God gave me him to show me a small glimpse of how God loves us!! . My little nephew said his favorite thing is “Edison’s cute little ears” and I thought that was so sweet. The physical characteristics of DS that Edison has makes him extra cute! . Finally, I love how God has used Edison and his Down Syndrome diagnosis to change me and my heart. He has humbled me, shaped me, loved me and opened my eyes to a beautiful life that I would otherwise never have known. All good things come from God and this boy had been one of the greatest gifts! . To see what others are saying, check out #whatiloveaboutyouqandaweek8

“May is #ichthyosisawareness month and I have a lot planned. I am asking you to help me make all of my ideas a success, because even though some of us choose to live in the public the fact remains that most people with any #visibledifference end up hiding. Hiding because it’s easier, hiding because their scared, hiding because the looks and questions can become overwhelming. I broke the day Anna was born and soon after I made a decision to go public because I needed her to know that it was just skin. She needs to understand that letting something like this hold her back is a choice and hopefully one she won’t make. I never knew that in the process I would start to heal. I didn’t know that others in the Ichthyosis community would treat me as if we were friends for years and help me mend. My goal for anna is for her to look in the mirror one day and see her difference as a gift, and have her love her skin because it makes her so special. My goal for the Ichthyosis community is to help. Help get supplies insurance won’t cover, help people have the confidence to boldly be who they are and love themselves for it. Help me make a difference this month because #Ichthyosis shouldn’t be taboo and visible differences should be easily accepted if not celebrated.” . . . . #harlequinichthyosis #babiesofinstagram #icthyosisawarenessmonth #changetheworld #orangesocks #specialneeds #specialneedsparenting #specialneedsmom #advocate #disability #prenataldiagnosis #support #grief #parentsupport #network

I had a great day and managed to take zero pictures I know it’s shocking! Here is a flash back so you guys all get your Anna fix! #harlequindiva #babiesofinstagram #ichthyosisawareness

Right. It's not in my nature to post stuff like this but I feel the need to address a few things after a similar post appeared in IG. Harlequin Ichthyosis is a rare genetic skin disorder. It's part of a group called Ichthyosis with harlequin being the most severe. Most babies in the past died from it, they died of possibly breathing difficulties as well as infection. Medical care is vital to maintain a reasonable level of life. This will include regular medical visits, cream, baths and let's be honest, a lot of sweeping up of skin. Many people asked about the appearance. The reason you see yellowish skin is because that's thick skin build up. The skin is often a barrier to expanding the lungs hence possible early death. Also the skin you see here has not been completely cleared away. You need a few baths to achieve that. And you need baths everyday to scrub away dead skin The inverted eyelids. Ectropian. Common in those with Ichthyosis. This means the eyes are just dried out and the skin is not supple enough. I use Vaseline around the eyelids to soften them. Longevity. It pisses me off no end when people commented that you should kill the baby. Yeah how would you feel if that was aimed at you?! I'm not sure you'd appreciate those comments now would you?! A baby born with Harlequin Ichthyosis will certainly have a rough start in life, but especially in today's medical advances and all, why are you denying the right for a child to fight on and live? Think about that. I'm all ears if you want to chat to me about Harlequin Ichthyosis. I would like to bring some positivity to the world in which we live. Thank you. #harlequinichthyosis #ichthyosis #ichthyosisawareness #FIRST #advocate #advice #dontjudgeme #muithomas #theichthyref #education #iamwhatiam

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

#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 get this question a lot and I absolutely love helping people understand Ichthyosis. Everybody’s bath routine is different and although some with Harlequin Ichthyosis don’t spend as much time in the bath I don’t know if any that don’t take at least one bath a day. Anna in particular now takes one 3-4 hour bath every morning. Water is essential for Ichthyosis because it expands the skin cells so the excess skin can be taken off. In annas water I usually don’t put anything because she has a special bathtub that makes micro bubbles and helps even more with the shedding process. After about two hours, a yogurt, some cereal, and a bottle anna falls asleep and I spend the last hour on her head while she is asleep for this I use water and sometimes shampoo or conditioner. Usually once a week I do a bleach bath and although that sounds scary it’s really just a bit of bleach in a ton of water much like a swimming pool. This helps kill any bacteria so anna doesn’t develop a skin infection. The water is always kept between 96-98 degrees and if it goes higher or lower she gets uncomfortable and will complain. Anna loves bathtime the most because her body feels comfortable and she is able to move her hands easily and can even stand, dance, and walk in the bathtub because her body isn’t so tight. #nowyouknow #knowledgeispower #ichthyosisawareness #harlequindiva #mermaid

The world around us - Ichthyosis. . . The term ichthyosis is derived from the Greek word ichthys, which means fish. Ichthyosis is not one disease but a group of disorders in which there is excess accumulation of epidermal cells resulting in the appearance of scales. Severity ranges from mild, asymptomatic to life threatening. There are a large number of types of ichthyosis; most are extremely rare. This condition tends to be worse in the dry, cold winter months and generally improve in the warmer, more humid months of summer. The most common type of ichthyosis is ichthyosis vulgaris which accounts for almost 95% of cases. Apart from ichthyosis vulgaris all other forms of ichthyosis are very rare. Ichthyosis vulgaris affects about 1:250 individuals. Ichthyosis occurs worldwide and affects people of all races. Other forms of ichthyosis are lamellar, x-linked, and epidermolytic hyperkeratosis. These conditions are inherited and based on expression of specific keratin genes which result in the formation of abnormal keratins Although the signs and symptoms may vary among the different types of ichthyosis, they all show the characteristic dry, rough, scaly skin. The boy in the picture is affected by a rare form of the disease. His name is Ramesh and he is now receiving treatment at the Kathmandu Medical College TDl. Courtesy: @medicalcreationsofficial . . . . Team Doctors For A Cause. #children #medicine #ichthyosis #ichthyosisawareness #fascinating #medicosity #medicalfacts #medicalphotos #amazingphoto #medicalphotography #disease #raredisease #rare #who #apfmagazine #natgeoyourshot #natgeocreative #discovery #incrediblephotos #medicine #dermatology #derma #dermatologist #pediatrician #india

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