Liste des hashtags les plus populaires par sujet #ICHTHYOSISAWARENESSMONTH

May is #ichthyosisawarenessmonth. I love the person god created in this picture. I love how she conquers and wins! I love how in love I fall with her time and time again.✨ #loveonyourselfalittle

My turn! So it’s May as you may have noticed and May is #ichthyosisawarenessmonth!! It’s pretty obvious that I have a visible difference. It’s called Harlequin Ichthyosis, a genetic skin disorder for which there is NO CURE. there are treatment options, but I repeat, NO CURE. Yet. My skin has essentially no barrier, which means I’m very sensitive to very hot or very cold weather, I can’t let my skin dry out too much or I get infections. I can’t regulate my temperature too well and I certainly don’t set a good example when I’m out in the sun for too long and turn into a walking lobster with an accent. My respiratory system is better than it was when I was younger and I credit a certain sport for helping me build up the strength to keep up with the masses. Ichthyosis has it blessings and it’s curses. And with the cards I’ve been dealt with in my life, it’s a blessing. I’ve met ONE other person in my life with HI, Hunter Steinitz and she’s been my sister from another mother for a very long time! And I hope that in life, I’ll be able to meet others with Ichthyosis too...when I can afford flights and days off ;) If you have questions about how I fail to look after myself properly, HOLLAR AT ME!!! #iam2018 #harlequinichthyosis #owninglife #theichthyref #hk #wellness #ichthyosis #me #inspire #movingforward

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

#tbt #ichthyosisawarenessmonth DAY 16 : First off, holy belly! Secondly, the white spots that you can see really well because my skin was so stretched out! Jackson and I have Ichthyosis En Confetti (or with confetti). It’s #Ichthyosis with white spots. The white spots are normal skin, but they wouldn’t take over in our lifetimes. Jackson only has 1 or 2 spots. I have them all over. They multiply as you get older. Some people have larger spots and some have smaller spots. They are trying to figure out what is causing our body to try and heal itself and see if they can somehow duplicate it. I was originally diagnosed with #cie but then was involved in a study at Yale when I was 16/17, where they took biopsies of the white spots and the red skin. Our gene mutation is different from CIE, so we got a new diagnosis then!

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.

#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

A nurse I will probably never be able to thank gave me this picture. I was still in the operating room when they called him out they told him something was wrong and showed him our baby. In a moment of absolute despair they locked eyes and a nurse took this with his phone. After when they had to tell me the news he was visibly upset and I didn’t know the extent of her wounds they left and I asked how bad. He replied "it’s bad, but I looked into her eyes and she has the most beautiful soul" every single time I look in her eyes I remember that moment. #harlequinichthyosis #ichthyosisawarenessmonth #ichthyosisawareness #vassarbrothersmedicalcenter @foundationforichthyosis

Day 2 #ichthyosisawarenessmonth #iam : These are my legs. Unedited. I’m hoping that by putting them on display, sharing my biggest insecurity (other than my armpits, but that’s a whole other issue ), that I will gain the confidence to no longer hide them. The white patches are fungal infections that take forever to go away. The bruised spots are bad varicose veins I’ve had since a teenager that have gotten worse with my pregnancies. I have bunions and my baby toes don’t touch the ground because of tightened skin. I have chicken legs. I wore a dress on Easter, which was a big deal. If you follow @jordanpage with Fun, Cheap or Free, she did a thing a few years ago on getting her varicose veins fixed and called it #jordanscrazylegs . I find that hilarious because it also fits my situation . . . #varicoseveins #legs #chickenlegs #bunions #knobbyknees #ichthyosis #spreadawareness #loveyourself #insecurities #selflove

This month is significant to makers because of #MeMadeMay but it's significant for me in a much more personal way, too. May is also Ichthyosis Awareness Month so I wrote a blog post all about a thing that influences my sewing and knitting a lot but I've never discussed in full: My Skin. . (Link in profile) . Fun Fact: Ichthyosis translates as "Fish Disease" in Latin so I guess I could tag this for #Mermay as well? #reallifemermaid . . . #ichthyosis #ichthyosisawareness #ichthyosisawarenessmonth #sewingblogger #sewcialists #sewersofinstagram #knittersofinstagram #sewaware #makeaware