Liste des hashtags les plus populaires par sujet #HARLEQUINICHTHYOSIS

Stay tuned... Can’t wait to see how our interview comes out! @specialbooksbyspecialkids #visibledifference #harlequinichthyosis #changetheworld #acceptance

Anna is helping me learn the violin you can see the amazement she has with music. #music #harlequinichthyosis #musictherapy #violin

First French braid ✨ She was at the pool the other day with a friend who had two adorable pigtail French braids done...so at a pool birthday party today, she asked for a copycat look ‍♀️ She was so proud of it . #harlequinichthyosis #adifferentbeautiful #frenchbraid #pooldays #summerbreak2019 #ichthyosis

Anna was fighting hard to stay awake and finish her chicken #sleepybaby #givememeat #harlequinichthyosis #cantstayawake

So thanks to this amazing cooling vest we were able to go out in the heat today and see a huge fireman’s parade. I used both sets of cooling packs and it was definitely hot, but Anna handled it so well. The amazing technology behind these cooling inserts, lets them freeze at 58 degrees and then stay that temp for up to three hours. They can also be “recharged” in a bag of ice water in only 20 minutes. Thanks @polarproducts for giving @harlequindiva some freedom today #harlequinichthyosis #coolingvest #amazingstuff #love

“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

So we’re into our 8th summer as ichthyosis parents #howisthatpossible I’ll be honest: summer makes me anxious. Overheating is a huge concern since Brenna can’t sweat, and the weather can change to “too hot” in just a few minutes some days. Add in bugs and sun exposure and everything else... last night I actually had the thought that it will be nice when fall arrives again Sometimes I feel like humidity is the only perk of this season! Over the years, we’ve found some things that make summer with ichthyosis a little easier... Swimsuits and protective hats with SPF from @swimzip - these are the BEST! Sunscreen by @sunbum - we’ve tried several kinds and this is our favorite, it doesn’t dry her skin out like others do Shoes/sandals from @seekairun - Brenna has been wearing them for years and loves how soft and supportive they are Soft cooling packs and antibacterial wipes from @me4kidz ☀️ Cooling vest from coolvest.com - this has packs that keep her core temperature cooled down. We also use a spray bottle filled with water to keep her cool! . (Not sponsored, just wanted to share some brands we use and love ) We’ve been thankful for a fairly mild summer so far (although rainy)...but it looks like our heat wave is starting this week. You’ll probably find us inside dreaming of crisp fall days #summerbreak #ichthyosis #harlequinichthyosis #survivingsummerheat #swimzip #sunbum #seekairun

I had a fever all night last night and I haven’t held my baby in over 24 hours I am sharing a couple of pictures from this time last year. #mywholeworld #harlequinichthyosis #fighter Follow our backup page @smootiepieorganics or Visit www.lovesmootiepie.com #babyboy #followme #pregnantandperfect #smootiepiebaby #pregnantfashion #pregnant #goldenchildchallenge #maternityfashion #momtobe #pregnantmum #mother #mummy #breastfeeding #bottlefeeding #newmom #baby #cutenessoverload #babyshower #lovesmootiepie

“When Anna was born I was hit with the reality that nothing in life is promised. That fear can subside, but once realized it will never disappear. Two days after our (recent) hospital visit, I got a phone call from an unknown number and I answered. On the other end was a Doctor from the hospital letting me know that Anna’s blood tested positive for bacteria and we had to come back ASAP. Now there is always a chance for a false positive, but we had to go back anyway and retest her blood and get different antibiotics to go (along) with the ones she is already taking. Her white (blood) count is more elevated than two days ago so she is fighting something, but we won’t know for two more days. They offered to keep her there, but with all of her bathing routines I felt it was best to go home and then go back tomorrow night for another shot. You own nothing in life, nothing promised, nothing earned, and nothing deserved. You get what you get, but what you can control is what you do with it and tonight I got to talk to a dermatology resident and give her all of my knowledge and although I missed date night with my husband I got to ride 3 hours with him in a car and take care of this amazing person. Please pray for a false positive and remember that life doesn’t owe us (anything), but instead we owe it to our life to make every second count.” - @harlequindiva Anna’s Mom is also raising money to support other families who have a child with Harlequin Ichthyosis. (Yes, that’s right! She’s an AMAZING Advocate! Not sure where she gets the extra time?) Anyways, please Donate on her website: HQDdonations.com which aims to give children like Anna, a better quality of life. We’re praying and sending you healthy vibes Miss. Anna @harlequindiva