Liste des hashtags les plus populaires par sujet #ICHTHYOSIS

Anna suffers from #Harlequinichthyosis.⠀ ⠀ 'When they told me there was a chance she wouldn't survive, I decided that wasn't an option. I'm not going to watch my child die.' Says Jennie, Anna's mum. ⠀ ⠀ Speaking of Anna's condition, Jennie said: 'When she's in the water, she's very comfortable and she usually remains like that for a while after a two-hour long #bath.'⠀ ⠀ 'She is starting to scratch herself a little, but for the most part she remains in good spirits. She's a very happy baby.'⠀ ⠀ 'Most #newborns don't survive with this, so we were very cautious with her.'⠀ ⠀ 'Having strangers stop and recognize her as a "normal" #baby has made me realise how much the work I've put into treating her has already made a difference.'⠀ ⠀ Jennie believes sharing information about Harlequin ichthyosis has made the public more accepting of the condition.⠀ ⠀ She said: 'We used to get negative comments here and there, but those stopped after I started educating everyone about her condition. Now that I'm open about it, the whole town knows Anna and they always have nice things to say.'⠀ ⠀ Dr Anton Alexandroff, from the British Skin Foundation, says creams and lotions are essential to calm the disease, adding: 'The condition requires regular moisturising throughout the day and medication called retinoids may help to control it.⠀ ⠀ 'The patient's skin is covered in hard, shiny, thickened plates of skin separated by deep red fissures.⠀ ⠀ 'Patients cannot sweat and regulate fluid loss, which may result in dehydration and heat stroke.'⠀ ⠀ Full story https://buff.ly/2NOtLBV⠀ ⠀ #harlequinichthyosis #ichthyosis #skin #skinproblems #skincondition #skindisease #BritishSkinFoundation #dermatology #dermatologists #instababies #kids

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

I was a bit apprehensive about doing the @underneath_we_are_women photoshoot, to be honest. I was not worried about what others would think, or how I looked, but about how I felt. I rarely go uncovered - and I worried I'd be cold and itchy and sore standing in my undies. I also felt like I should be covered - for modesty and comfort, I guess. What about future employers?! So @kiralouise___, who I just met, offered to take me to the house of fashionable lingerie (Big W) and I grabbed a cami to go over my bra. But when I took my clothes off, I was far more at ease than I imagined. @amydfoto and her Mum were so good at providing a safe and relaxed atmosphere, and talking to the other women - who were all as nervous as I was - helped a lot. No one apart from Adam and medical staff and occasionally my Mum sees my full body - the scales, the motly redness - but today I felt happy enough to let people in. It's important to me that bodies like mine are seen in a non medicalised and non exploitative way. Its important for other women (and men) with ichthyosis to see themselves in the mainstream, and for those without to see us too. What's most important, I think, is to allow others to see that we are more than ok with our bodies and appearance, despite society telling us we should fix it and be ashamed. This is me - happy, scaly, silly, curvy, red, strong, beautiful and bare. I am defying others' expectations of how I should feel about my body and how I should present myself. (A book featuring 100 diverse women will be out next year. I am wearing undies and cami from @jockeyunderwear and bra from @targetaus - comfort over sultriness all the way!)

I was in my local fruit and veg shop on the weekend, and a little girl, about three, asked her dad "whys that lady's face red?" He said "that's Carly, that's just her skin". Her dad asked her if she wanted to ask me any questions. As I passed them I smiled and asked if she wanted to ask me something? "No" she said. I didn't know the man and his daughter, but I guess he's seen me around, or seen my work. But I was so grateful for his factual, kind response. Parenting done right. And also a reflection of shopping small and locally ❤️ I have written what to do if you don't know what to tell your child about mine or others' facial differences. Click the link in my profile ⬆️⬆️ Adam always manages to take great candid shots of me. Image: close up of a woman's face. It's red, and she has short dark curly hair. She's wearing a red and gold spotted scarf. #syw18 #representationmatters

*Watch and Share* On the eve of International Day of the Girl Child, Vicks India and Gauri Sawant, a transgender activist, invites you to watch yet another heart touching story, ‘One in a Million’. Vicks, a brand synonymous with family and care, has launched the second edition of Vicks #TouchOfCare, its heart-warming campaign that went viral last year. ‘Vicks - One in a Million’ is yet another inspiring story, this time of Nisha, a young girl who has Ichthyosis, a genetic skin condition. The transformation of Nisha due to the love and care provided by her adoptive parents Aloma and David Lobo, forms the crux of this digital video. #therawtextures #ichthyosis #love #video #instagram #vicks #equality #adoption

Always be the #superman (or #superwoman) - - - Photo credit to @hkphotographystudio. He’s a cool #Canadian - - - #photography #closeup #headshots #smile #survivor #harlequinichthyosis #inspire #ichthyosis #rareskin #raredisease #demmuscles #hkwellness #referee #yogiintraining #hkphotography #sayyes #rugbyreferee

#littlestwarriorwednesday Brenna was born in December 2011 and unexpectedly diagnosed with an extremely rare and severe skin disorder called Harlequin ichthyosis. Brenna makes skin about 10 times faster than most people and can't shed it quickly enough, leaving her with an appearance of a terrible sunburn all over her body. Because of this disorder, Brenna's skin has trouble doing its jobs... she has difficulty retaining moisture, keeping bacteria out (so she gets skin infections easily) and regulating her body temperature; she can't even physically sweat. Our days are filled with applying a thick lotion called Aquaphor to keep her skin moisturized and comfortable, doctors and therapists, a long daily bath where we can exfoliate the extra skin she makes, and lots of eating because Brenna’s body uses so many calories simply to produce skin! Brenna is small for her age, has very little hair because the over-production of skin kills off her hair follicles, and her extremities and some of her features are tiny because her tight original skin didn’t allow them to grow. Because of this, we encounter a lot of stares, questions and ignorance from people who assume we “let” her get severely sunburned. But our days are also full of uninhibited joy, real contentment, gratitude and faith in God. Brenna is determined, extroverted, and sweet and sassy all at the same time. She is so attached to her parents and shares a unique bond with her brother Connor – they are each other’s biggest fans. Physically, Brenna is much different that we expected. And we are discovering day by day, week by week, just how beautiful different can be. In August 2016, my book A Different Beautiful was released and is available on Amazon and in bookstores. It shares about our family's experiences raising a child with special needs/physical differences and what we have discovered about celebrating the beautiful goodness that God has placed in our lives #ADifferentBeautiful #Harlequinichthyosis #ichthyosis #ichthyosisawareness #ichthyosisawarenessmonth

May is #ichthyosisawareness month! Fun Fact- Jamison has Aquaphor applied to his entire body every 2 hours + as needed for "dry" areas! #raisingawarness #harlequinichthyosis #aquaphor #babyboy. We are so excited to meet other #ichthyosis families in #nashville this year!

Every body is a swimsuit body. Ready for Vietnam from next weekend. Let’s face it, it will be a miracle if I dip a toe in the pool, so I might just wear this in the bath. (There is an outtake of me in my stories.) | Image: woman with red face and body, standing indoors, wearing a blue floral swimsuit. On either side of her is a wine rack and the hallway. #effyourbeautystandards #disabledandcute #ichthyosis