List of the most popular hashtags for theme #ICTHYOSISAWARENESSMONTH

May is #IcthyosisAwarenessMonth I have harlequin ichthyosis am 30 years old and live in the UK. #ichthyosis #harlequins #harlequinichthyosis #share #research #uk #30 #OITNB #oitnbfans #orangeisthenewblack #pll #pllfamily #prisonbreak #prisonbreakers #ahs #ahsfandom #Preponsarmy #selfie

“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

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

THE LINK IS UP! Check out my bio for the love what matters (Annas birth) story you were all asking for ♥️♥️ also anna is feeling legit famous and so loved with all of these fun pictures you guys keep sending her. It’s awesome and we love you #icthyosisawarenessmonth #mydiva #lovewhatmatters #birthstory #birthtrauma #strongerthanfear #harlequindiva

These pictures are from the hospital and Annas first real bath. I have spent so many hours next to a bathtub since this first day and of her nearly 20 months on this earth she has spent 3 of them in water. I cannot explain to you how important water is to a person with Ichthyosis and how much this micro bubble technology helps the bathing process. Bathes become easier and shorter, little to no scrubbing with a pain free relaxing bath. I don’t know why insurance won’t cover this, but I am going to change that. I will cover these bath tubs because they are so life changing and with your help we can change someones whole life. Link in bio HQDdonations.com $2/12mo=$24 #icthyosisawarenessmonth #changealife #pocketchange

If you are on my Facebook you will remember Angel a girl from the Philippines that we were able to raise over $1000 for. We were able to wire money to a local contact that could give her immediate help and the box that I sent has finally arrived making for a perfect Mother’s Day gift. My goal for my website is to get enough monthly donations that I can give a bathtub away a month and then further my mission to help people who have no other means. To put into perspective The difference in how far a dollar can go I was able to ship a box for $100 send a few hundred to help immediately with clothes food bedding (with lots leftover) and with the rest of the money believe it or not we are going to work on building her a house with a room for her to bathe because right now she takes a bath outside in a water basin. That’s how far we’ve made your money stretch and in the second picture you can see the difference in her eyes from sad and shy to happy and shining there is no better Mother’s Day gift in the world than that picture. @theflipsfamilyph thank you so much for your help because without it none of this would be possible. #happymothersday #countyourblessings #icthyosisawarenessmonth #changealifetoday HQDdonations.com

Did you know that the @aquaphorus company gives a case of free aquaphor to people suffering from ichthyosis every three months! This is life saving for people good job aquaphor! #aquaphorbaby #beiersdorf #icthyosisawarenessmonth

Soo meatballs on a stick for the win! It’s still #icthyosisawarenessmonth and I’ve been struggling a bit as have other parents that I’ve seen because honestly it’s hard. It’s really stressful to try to educate and raise awareness when you feel like you are just pointing out all of the things your kids can’t do. You tell about the restrictions and the extra work on everyone and all of the sad scary moments, but for one whole month you feel like you aren’t saying anything positive. For me Ichthyosis showed me that there are people all around who would go to the ends of the earth for me if I would just let them. It taught me that a little bit of awareness can open up a whole new world of acceptance and as hard is it may be to constantly talk about the bad parts it’s a necessary thing. Teaching people is what makes people understand and then want to help, and you have helped so much. If you want to help us buy bathtubs with special micro bubbles for people with Ichthyosis then please check out our website at HQDdonations.com or link in bio for insta. You guys are literally bridging a gap for people with #visibledifference and letting them know they are cared about too so thank you so much ♥️♥️#checkitout #pocketchange #changetheworld #harlequinichthyosis

So many people are asking about if your life expectancy is effected with #harlequinichthyosis and the truth is they don’t know. I remember looking at a list of questions I had for the dermatologists the first time I met with them. I stumbled through a question as if I wasn’t even sure if I wanted to ask it “how....long.... will” and he answered before I finished with “we don’t know” the oldest person with Harlequin is only in her early 30’s so we have no idea. Before that no one had ever lived through infancy so we really can’t be sure. What he didn’t say is that your skin controls absolutely everything and that when it doesn’t work properly it’s much more then cosmetic. Very young kids are in wheel chairs from the pain they feel walking, itching becomes a huge problem especially when you get a bit older and you have school and life so your baths get much shorter. Your eyes most often get damaged from the lack of protection and overall you are a sitting duck for any type of infection. Many people asked if Stephanie died because of Ichthyosis and the answer is yes and no she died because two medicines didn’t mix well and caused a reaction, but both medicines were prescribed for her pain from Ichthyosis so yes and no. Regardless of Annas length of time on this earth I know she will make it count in the biggest way by helping other people thrive. The money I’m raising goes directly to giving people a better quality of life... after all it’s not about the time you’re given, but rather what you do with the time you’re given. Please donate now HQDdonations.com #linkinbio #icthyosisawarenessmonth