#raredisease

(77905) Posts


No matter how long the tunnel is, I will always go with you /  No importa que tan largo sea el tunel, yo iré siempre contigo. Know more about Iñaki's fight on http://crwd.fr/2kAPU9g . 
#sanfilipposyndrome #savinginaki #genetherapyforiñaki #weneedhelp #realsuperheroe #momlife #fightingforyourlife #littleandbrave #másqueamivida #raredisease  #pleasedontleaveme #quédateconmigo
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No matter how long the tunnel is, I will always go with you / No importa que tan largo sea el tunel, yo iré siempre contigo. Know more about Iñaki's fight on http://crwd.fr/2kAPU9g . #sanfilipposyndrome #savinginaki #genetherapyforiñaki #weneedhelp #realsuperheroe #momlife #fightingforyourlife #littleandbrave #másqueamivida #raredisease #pleasedontleaveme #quédateconmigo

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CLC MEMBER FEATURE: My name is Jess, I have lived in Melbourne, Australia my whole life up until 4 weeks ago. My husband, daughter and I have moved to the Cayman Islands in the Caribbean. I struggled with endometriosis for many years, well before I knew it was a disease. I always had bad period pain but I thought it was normal... during one cycle I started to bleed outside the time of my actual period. This happened for a few months before I began seeking medical help. I was diagnosed with endo after a laparoscopy.
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The lap only helped for a few months, symptoms came back so my partner and I decided to try for a baby. After 9 months of trying to conceive my gynaecologist advised we will need to do IVF. We were booked in for our initial appointment with the doctor to talk about the journey we were about to embark on, before the appointment on that same day I decided to take a pregnancy test since I'd had an extremely vivid dream that I was pregnant. I did the test and it was positive! Total miracle!
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Once my period came back after I stop breastfeeding my symptoms came back with a vengeance, having a very active toddler and crippling pains to the point of being bed ridden is very difficult to manage. I had another lap in October last year which helped me fall pregnant again, unfortunately I had a miscarriage at the end of January which shook me to my core and another miscarriage in May.. no one can prepare you for the pain and sadness..
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For the last 6 months I've been seeking alternative remedies to help with the pain. I've had weekly fertility acupuncture which has changed my cycle and reduced the pain and heaviness of the bleeding. I'm also taking Chinese herbs which have reduced the severity of ovulation pain and the unbelievable pain of my periods. I'm so happy with how far my body has come after all the trauma it's been through this year.
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I am so grateful for everything I've endured, it's shaped me into the strong, resilient mum that I am today. Having my little online community @endohelp_australia has helped me connect with women all around the world who suffer the same way I do. Keep fighting the daily battle, you're definitely not alone.
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CLC MEMBER FEATURE: My name is Jess, I have lived in Melbourne, Australia my whole life up until 4 weeks ago. My husband, daughter and I have moved to the Cayman Islands in the Caribbean. I struggled with endometriosis for many years, well before I knew it was a disease. I always had bad period pain but I thought it was normal... during one cycle I started to bleed outside the time of my actual period. This happened for a few months before I began seeking medical help. I was diagnosed with endo after a laparoscopy. • The lap only helped for a few months, symptoms came back so my partner and I decided to try for a baby. After 9 months of trying to conceive my gynaecologist advised we will need to do IVF. We were booked in for our initial appointment with the doctor to talk about the journey we were about to embark on, before the appointment on that same day I decided to take a pregnancy test since I'd had an extremely vivid dream that I was pregnant. I did the test and it was positive! Total miracle! • Once my period came back after I stop breastfeeding my symptoms came back with a vengeance, having a very active toddler and crippling pains to the point of being bed ridden is very difficult to manage. I had another lap in October last year which helped me fall pregnant again, unfortunately I had a miscarriage at the end of January which shook me to my core and another miscarriage in May.. no one can prepare you for the pain and sadness.. • For the last 6 months I've been seeking alternative remedies to help with the pain. I've had weekly fertility acupuncture which has changed my cycle and reduced the pain and heaviness of the bleeding. I'm also taking Chinese herbs which have reduced the severity of ovulation pain and the unbelievable pain of my periods. I'm so happy with how far my body has come after all the trauma it's been through this year. • I am so grateful for everything I've endured, it's shaped me into the strong, resilient mum that I am today. Having my little online community @endohelp_australia has helped me connect with women all around the world who suffer the same way I do. Keep fighting the daily battle, you're definitely not alone.

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It takes a lot to keep my body running right now! This is everything needed for one morning: my AM pills, antiviral IV, saline fluids IV, and all the flushes needed for administering those, as well as port change materials. One day a week a home health nurse comes to replace my port needle and this was that day. I also take pills as needed for pain, with lunch and at bedtime, and do a PM antiviral IV and saline fluids IV. It’s a lot of stuff to keep track of and it can be quite overwhelming! So enjoy my #medaesthetic #flatlay. Gotta stay entertained somehow 😂
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#spoonie #chronicillness #chronicpain #rheum #raredisease #curearthritis #SJIA #JIA #lupus #rhupus #stillsdisease #juvenilearthritis #systemicJIA #dermatomyositis #bechets #bechetsdisease #autoinflammatory #autoimmune #cvid #systemicjuvenileidiopathicarthritis #ivig #hypogammaglobulinemia #cmv #powerport #portacath #medaesthetics #homehealth #beingsickisafulltimejob
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It takes a lot to keep my body running right now! This is everything needed for one morning: my AM pills, antiviral IV, saline fluids IV, and all the flushes needed for administering those, as well as port change materials. One day a week a home health nurse comes to replace my port needle and this was that day. I also take pills as needed for pain, with lunch and at bedtime, and do a PM antiviral IV and saline fluids IV. It’s a lot of stuff to keep track of and it can be quite overwhelming! So enjoy my #medaesthetic #flatlay. Gotta stay entertained somehow 😂 . . . #spoonie #chronicillness #chronicpain #rheum #raredisease #curearthritis #SJIA #JIA #lupus #rhupus #stillsdisease #juvenilearthritis #systemicJIA #dermatomyositis #bechets #bechetsdisease #autoinflammatory #autoimmune #cvid #systemicjuvenileidiopathicarthritis #ivig #hypogammaglobulinemia #cmv #powerport #portacath #medaesthetics #homehealth #beingsickisafulltimejob

Team effort playing these arcade games.
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Team effort playing these arcade games.

My husband posted this and I had to share for my very own personal reasons. I had my ileostomy surgery in June 2016 and have not even shuddered to think about trying on a pair of jeans 👖 over my ostomy bag.
With CIPO and all the distention and pain, I’ve lived in oversized everything. But today, I don’t know, I just wanted to try. And of course I went for my skinniest, littlest jeans from before surgery totally preparing myself for a mental breakdown but I was shocked when they fit over my bag. So this post is for every person out there worried how an ostomy bag will change their life... it will. It will save it. If i wasn’t battling CIPO, this bag would’ve been the beautiful end to my health journey. But CIPO unfortunately does not have a cure. But, bag... what bag?? #ileostomy #ostomate #ostomateproud #ostomy #ostomybag #loopileostomy #ileostomyreversalsurgery #endileostomy #whatbag #ostomyfashion #nocolonstillrollin #cipo #motilitydisorder #raredisease #insicknessandinhealth #loveofmylife
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My husband posted this and I had to share for my very own personal reasons. I had my ileostomy surgery in June 2016 and have not even shuddered to think about trying on a pair of jeans 👖 over my ostomy bag. With CIPO and all the distention and pain, I’ve lived in oversized everything. But today, I don’t know, I just wanted to try. And of course I went for my skinniest, littlest jeans from before surgery totally preparing myself for a mental breakdown but I was shocked when they fit over my bag. So this post is for every person out there worried how an ostomy bag will change their life... it will. It will save it. If i wasn’t battling CIPO, this bag would’ve been the beautiful end to my health journey. But CIPO unfortunately does not have a cure. But, bag... what bag?? #ileostomy #ostomate #ostomateproud #ostomy #ostomybag #loopileostomy #ileostomyreversalsurgery #endileostomy #whatbag #ostomyfashion #nocolonstillrollin #cipo #motilitydisorder #raredisease #insicknessandinhealth #loveofmylife

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That would be wonderful Santa
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That would be wonderful Santa

🌲 It's week 3 of the December #SpreadLove17 contest hosted by @spoonieessntls & @theunchargeables 🌟

Day 16: Time for some self care, self love and mindfulness. Remember to tag the hosts so we can find your post!

Scroll through pics for instructions on how you could win. Spread the love this December! ❄ love, Char
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🌟 WIN unique chronic illness clothes from The Unchargeables Shop. Link to giveaway in bio.
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#TheUnchargeables #Spoonie #unchargeables #chronicillness #Spoonies #SpoonieLife #ChronicPain #ChronicFatigue #disability #chronicpainwarrior #InvisibleIllness #autoimmune #supportgroup #lowonenergy #lowbattery #contest #spreadlove #win #StrongerThanYouThink #chronicillnesswarrior #autoimmunedisease #fibromyalgia #raredisease #pcos #endometriosis #migraine #butyoudontlooksick
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🌲 It's week 3 of the December #SpreadLove17 contest hosted by @spoonieessntls & @theunchargeables 🌟 Day 16: Time for some self care, self love and mindfulness. Remember to tag the hosts so we can find your post! Scroll through pics for instructions on how you could win. Spread the love this December! ❄ love, Char --------------------------------------------------- 🌟 WIN unique chronic illness clothes from The Unchargeables Shop. Link to giveaway in bio. ---------------------------------------------------- #TheUnchargeables #Spoonie #unchargeables #chronicillness #Spoonies #SpoonieLife #ChronicPain #ChronicFatigue #disability #chronicpainwarrior #InvisibleIllness #autoimmune #supportgroup #lowonenergy #lowbattery #contest #spreadlove #win #StrongerThanYouThink #chronicillnesswarrior #autoimmunedisease #fibromyalgia #raredisease #pcos #endometriosis #migraine #butyoudontlooksick

#Repost @lionheartlifehealing (@get_repost)
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Yes!!!! I love my Sunday routine - I go to work, then come home and reset for the week. I clean my room, set my pillbox, light a candle, maybe even do some laundry. It’s a calming way to get ready for the week ahead. Do you do a #sundayreset ? What’s your reset routine? 
#consistencyiskey #routine #sunday #sunyay #work #sick #spoonie #spoonielife #chronic #chronicdisease #chronicpain #chronicfatigue #chronicillness #raredisease #fibromyalgia #fibromyalgiawarrior #fibromyalgiaawareness #endometriosis #endometriosisawareness #endo #lupus #lupuswarrior #lymedisease #diabetes #treatyoself #selfcare #selflove #boringselfcare
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#Repost @lionheartlifehealing (@get_repost) ・・・ Yes!!!! I love my Sunday routine - I go to work, then come home and reset for the week. I clean my room, set my pillbox, light a candle, maybe even do some laundry. It’s a calming way to get ready for the week ahead. Do you do a #sundayreset ? What’s your reset routine? #consistencyiskey #routine #sunday #sunyay #work #sick #spoonie #spoonielife #chronic #chronicdisease #chronicpain #chronicfatigue #chronicillness #raredisease #fibromyalgia #fibromyalgiawarrior #fibromyalgiaawareness #endometriosis #endometriosisawareness #endo #lupus #lupuswarrior #lymedisease #diabetes #treatyoself #selfcare #selflove #boringselfcare

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Do You Have The Right Heart to Give?
The Pulmonary Hypertension Association (PHA) fuels personal passions and empowers people, living with PH, to confidently face challenges that confront them. PHA is the only national charity providing support and educational resources for people living with PH, for families, caregivers, health care professionals who specialize in caring for people with the often misdiagnosed disease, and for PH researchers searching for a cure. Please make your gift today 🤗www.phassociation.org.  Follow them @phassociation  #TheRightHeart
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Do You Have The Right Heart to Give? The Pulmonary Hypertension Association (PHA) fuels personal passions and empowers people, living with PH, to confidently face challenges that confront them. PHA is the only national charity providing support and educational resources for people living with PH, for families, caregivers, health care professionals who specialize in caring for people with the often misdiagnosed disease, and for PH researchers searching for a cure. Please make your gift today 🤗www.phassociation.org. Follow them @phassociation #TheRightHeart

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11/25/17 🌟
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11/25/17 🌟

The was a few weeks ago! #descansogardens
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The was a few weeks ago! #descansogardens

Curiosity!  How many amazing things are there to discover! / ¡Cuántas cosas maravillosas hay por descubrir! ¡Curiosidad por todo! 
#momlife #fightingforyourlife #littleandbrave #másqueamivida #raredisease #SanfilippoSyndrome #savinginaki #GeneTherapyforIñaki #pleasedontleaveme #quédateconmigo Watch Inaki's story on www.gofundme.com/thelifeofmyson
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Curiosity! How many amazing things are there to discover! / ¡Cuántas cosas maravillosas hay por descubrir! ¡Curiosidad por todo! #momlife #fightingforyourlife #littleandbrave #másqueamivida #raredisease #SanfilippoSyndrome #savinginaki #GeneTherapyforIñaki #pleasedontleaveme #quédateconmigo Watch Inaki's story on www.gofundme.com/thelifeofmyson

We are home and happy! But the nursing doesn’t stop when we leave the hospital! 
Morning routine:
-inhailer - 15 mins CPT vest with saline chloride nebulizer -cough assist with suction
-fill food bag -morning meds
-extra kisses
#momnurse #stayathomemom #raredisease #jojosjoyfuljourney
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We are home and happy! But the nursing doesn’t stop when we leave the hospital! Morning routine: -inhailer - 15 mins CPT vest with saline chloride nebulizer -cough assist with suction -fill food bag -morning meds -extra kisses #momnurse #stayathomemom #raredisease #jojosjoyfuljourney

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Santa, I mean our Fearless Leader and the Founder/Executive Director of Next Step, is putting the final ornaments on our office Christmas tree. Our office is looking beautiful for today's annual Next Step Holiday Party for our young participants living with chronic illnesses. Let the fun begin! ________________________________________ #ShatterLimitationsElevateAspirations #nonprofit #youth #youngpeople #teen #youngadult #cancer #HIV #raregeneticdisorder #chronicillness #raredisease #sicklecell #holidayparty #party #HappyHolidays #holidays #Christmastree #decorating #ornament #love #beautiful #lights #holidayfun #boss #theboss #fun #happy #gorgeous #whostheboss #Santa
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Santa, I mean our Fearless Leader and the Founder/Executive Director of Next Step, is putting the final ornaments on our office Christmas tree. Our office is looking beautiful for today's annual Next Step Holiday Party for our young participants living with chronic illnesses. Let the fun begin! ________________________________________ #ShatterLimitationsElevateAspirations #nonprofit #youth #youngpeople #teen #youngadult #cancer #HIV #raregeneticdisorder #chronicillness #raredisease #sicklecell #holidayparty #party #HappyHolidays #holidays #Christmastree #decorating #ornament #love #beautiful #lights #holidayfun #boss #theboss #fun #happy #gorgeous #whostheboss #Santa

Pool day with my niece & nephew. It's great to have the opportunity to spend quality alone time with them as their aunt and also it's wonderful to teach them with actions that disabled people can have normal independent lives #disability #disabilityawareness #iamdisabled #disabledandcute #disabledandbeautiful #marfansyndrome #marfansyndromeawareness #raredisease #epof #lowvision #lowvisionawareness #bajavision #bastonverde #visualimpaired #highmyopia #thickglasses #girlwithglasses #aunt #iamanaunt #proudauntie #ilovemyniece #ilovemynephew #family #familylove 💕💜💕💜💕
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Pool day with my niece & nephew. It's great to have the opportunity to spend quality alone time with them as their aunt and also it's wonderful to teach them with actions that disabled people can have normal independent lives #disability #disabilityawareness #iamdisabled #disabledandcute #disabledandbeautiful #marfansyndrome #marfansyndromeawareness #raredisease #epof #lowvision #lowvisionawareness #bajavision #bastonverde #visualimpaired #highmyopia #thickglasses #girlwithglasses #aunt #iamanaunt #proudauntie #ilovemyniece #ilovemynephew #family #familylove 💕💜💕💜💕

Ok - this may be a less than popular opinion...but caffeine is the topic! I love a good cup of coffee as much as anyone. I have been a regular coffee drinker for almost 16 years, drinking up to 6 cups a day easily. My love of coffee is an understatement!

But...I quit it AGAIN. This is the FIRST TIME ever being caffeine free AND having perfect levels as an adult. I started to believe the effects of coffee help mask high phe levels. For years I felt pretty ok with levels of 7 or 8. (And my daily doses of caffeine). Once my levels got down below 5 I began to notice I was less interested in it. Caffeine increases dopamine production which declines with high levels.

The first few weeks of withdrawal were MISERABLE - then I suddenly felt my appetite improve, my cravings decrease and my energy balanced. Fast forward to a few too many (minor) cheat days recently and I could barely get anything done. I was sooo tired and unfocused, but I chose not to take caffeine. I believe I was using caffeine to self medicate the effects of too much phenylalanine. I'm not suggesting you quit coffee if you love it - it is a free food that can prevent eating other off limit foods. But know how it may affect you. Your brain health and good levels are way more important than the false energy boost from caffeine!
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Ok - this may be a less than popular opinion...but caffeine is the topic! I love a good cup of coffee as much as anyone. I have been a regular coffee drinker for almost 16 years, drinking up to 6 cups a day easily. My love of coffee is an understatement! But...I quit it AGAIN. This is the FIRST TIME ever being caffeine free AND having perfect levels as an adult. I started to believe the effects of coffee help mask high phe levels. For years I felt pretty ok with levels of 7 or 8. (And my daily doses of caffeine). Once my levels got down below 5 I began to notice I was less interested in it. Caffeine increases dopamine production which declines with high levels. The first few weeks of withdrawal were MISERABLE - then I suddenly felt my appetite improve, my cravings decrease and my energy balanced. Fast forward to a few too many (minor) cheat days recently and I could barely get anything done. I was sooo tired and unfocused, but I chose not to take caffeine. I believe I was using caffeine to self medicate the effects of too much phenylalanine. I'm not suggesting you quit coffee if you love it - it is a free food that can prevent eating other off limit foods. But know how it may affect you. Your brain health and good levels are way more important than the false energy boost from caffeine!

🦋 FOP Mothers Retreat 2018 🦋By Mothers ~ For Mothers ~ With Mothers. (link in bio)‬
‪https://fopmothersretreat.net ‬ ‪#fopmothersretreat #FOPmothers ‪FOP (Fibrodysplasia Ossificans Progressiva) #curefop #raredisease ‬
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🦋 FOP Mothers Retreat 2018 🦋By Mothers ~ For Mothers ~ With Mothers. (link in bio)‬ ‪https://fopmothersretreat.net ‬ ‪#fopmothersretreat #FOPmothers ‪FOP (Fibrodysplasia Ossificans Progressiva) #curefop #raredisease

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The next amazing thing to hit the raffle page. A basket of totally amazing homemade EB products by Kendra Millner. For EB kids, as well as any kids!!
-Bath Salts 20oz Bottle, Lavender Scent
-Foaming Baby Soap- 8oz Citrus Scent
-EB Salve “unscented” 4oz. (Smells like coconut due to the oil, no essential oils)
-EB Salve- Baby Safe 4oz Lavender -EB Salve- Hi Scented 4oz Lavender
-Lotion Bars 2x, 2oz Each Floral Scent
-Lip Balm- .5oz Peppermint -Lip Balm - .5oz Red Tint Peppermint -Cuticle Cream - .5oz Lemon Scent

All these “potions ” are homemade from someone in the EB community, so they are sure to be great 
There will be 10 spots for $10 each in a drawing for your chance to have this basket delivered to you! 
PayPal at TheBigRide2017@gmail.com 🦋💙🚴💛🦋
#eb #KH #thebigrideforeb #judethecat #epidermolysisbullosa #ebsucks #whooo #cantwait #divaship #needacure #kickingass #letstalk #ebawareness #makingourownwaves
#raredisease #tomtaylor
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The next amazing thing to hit the raffle page. A basket of totally amazing homemade EB products by Kendra Millner. For EB kids, as well as any kids!! -Bath Salts 20oz Bottle, Lavender Scent -Foaming Baby Soap- 8oz Citrus Scent -EB Salve “unscented” 4oz. (Smells like coconut due to the oil, no essential oils) -EB Salve- Baby Safe 4oz Lavender -EB Salve- Hi Scented 4oz Lavender -Lotion Bars 2x, 2oz Each Floral Scent -Lip Balm- .5oz Peppermint -Lip Balm - .5oz Red Tint Peppermint -Cuticle Cream - .5oz Lemon Scent All these “potions ” are homemade from someone in the EB community, so they are sure to be great There will be 10 spots for $10 each in a drawing for your chance to have this basket delivered to you! PayPal at TheBigRide2017@gmail.com 🦋💙🚴💛🦋 #eb #KH #thebigrideforeb #judethecat #epidermolysisbullosa #ebsucks #whooo #cantwait #divaship #needacure #kickingass #letstalk #ebawareness #makingourownwaves #raredisease #tomtaylor

I got the itinerary for my first HD testing visit today. It still seems surreal that it's happening, but this brings the reality home a little bit more. The three appointments listed are with the genetic counselor, neurologist, and psychologist.

#huntingtonsdisease #huntingtons #curehd #genetictesting #genetics #geneticdisorder #geneticdisease #neurology #brain #braindisease #braindisorder #raredisease #careaboutrare #hopeitsinmygenes #psychology #psychologist
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I got the itinerary for my first HD testing visit today. It still seems surreal that it's happening, but this brings the reality home a little bit more. The three appointments listed are with the genetic counselor, neurologist, and psychologist. #huntingtonsdisease #huntingtons #curehd #genetictesting #genetics #geneticdisorder #geneticdisease #neurology #brain #braindisease #braindisorder #raredisease #careaboutrare #hopeitsinmygenes #psychology #psychologist

On the inside of every shirt, sweater, and hoodie we make, we print a subtle reminder of our message to you! Have #couragetoconquer the challenges and adversities in your life! #mindmatterink #cureFA
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On the inside of every shirt, sweater, and hoodie we make, we print a subtle reminder of our message to you! Have #couragetoconquer the challenges and adversities in your life! #mindmatterink #cureFA

Quita made her homemade hot chocolate for today's annual Next Step Holiday Party for our young participants living with cancer, HIV and rare genetic disorders. I can confirm that it's DELICIOUS!________________________________________________________ #ShatterLimitationsElevateAspirations #hotchocolate #homemade #hotchocolate #yummy #delicious #holidayparty #youth #teens #youngadults #party #celebration #friends #community #cancer #HIV #raregeneticdisorder #chronicillness #sicklecell #raredisease #happy #HappyHolidays #holidays #love #food #drink #chocolate #chef #foodporn #foodie #nonprofit
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Quita made her homemade hot chocolate for today's annual Next Step Holiday Party for our young participants living with cancer, HIV and rare genetic disorders. I can confirm that it's DELICIOUS!________________________________________________________ #ShatterLimitationsElevateAspirations #hotchocolate #homemade #hotchocolate #yummy #delicious #holidayparty #youth #teens #youngadults #party #celebration #friends #community #cancer #HIV #raregeneticdisorder #chronicillness #sicklecell #raredisease #happy #HappyHolidays #holidays #love #food #drink #chocolate #chef #foodporn #foodie #nonprofit

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Got the lurgy. Trying to keep the girl well. #RettSyndrome  #nightmare #raredisease #infectioncontrol
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Got the lurgy. Trying to keep the girl well. #RettSyndrome #nightmare #raredisease #infectioncontrol

Dogs trying to steal my smoothie bowl 🐶
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Dogs trying to steal my smoothie bowl 🐶

In honor of #TheLastJedi  opening weekend, be like C-3PO and consider donating your spare parts. Visit organdonor.gov and may the force be with you! #DonateLife #Alportsyndrome #kidneydisease #raredisease #organdonation #kidney #kidneytransplant #starwars
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In honor of #TheLastJedi  opening weekend, be like C-3PO and consider donating your spare parts. Visit organdonor.gov and may the force be with you! #DonateLife #Alportsyndrome #kidneydisease #raredisease #organdonation #kidney #kidneytransplant #starwars

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Everybody’s road will take a different path and go at different speeds, and that’s okay. Your time might not be at the same time as someone else’s, but it’ll come. Maybe not when you want it to, but when it’s right. 📷: @vikacita_life #ChronicLoveClub
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Everybody’s road will take a different path and go at different speeds, and that’s okay. Your time might not be at the same time as someone else’s, but it’ll come. Maybe not when you want it to, but when it’s right. 📷: @vikacita_life #ChronicLoveClub

👩🏻🤪SMILE, SHARE & INSPIRE! I’M SORRY I CAN’T ACT MY AGE!! 👵🏽Hellloooooo!! Do you ever play around keep your body, mind and soul young and vital no matter what age you are or are you too serious and hard as a rock? Ahahaha well sorry but im not like that and you better WATCH THIS CHEER UP ENJOY & SMILE! Hugs Kiss Kiss!! 💋💋•••••••••••••••••••••••••••••••••••••••. #model #instavideo #smile #inspire #fitnesss #influencer #gym #fitgirl #instafashion
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👩🏻🤪SMILE, SHARE & INSPIRE! I’M SORRY I CAN’T ACT MY AGE!! 👵🏽Hellloooooo!! Do you ever play around keep your body, mind and soul young and vital no matter what age you are or are you too serious and hard as a rock? Ahahaha well sorry but im not like that and you better WATCH THIS CHEER UP ENJOY & SMILE! Hugs Kiss Kiss!! 💋💋•••••••••••••••••••••••••••••••••••••••. #model #instavideo #smile #inspire #fitnesss #influencer #gym #fitgirl #instafashion

🎄🎶 On the FIFTH day of Christmas we have been gifted with INFLUENCE ... to ASK for what we need and want ... to CHALLENGE people to think differently ... to TEACH people to think differently ... to MODEL for people a new way of believing and doing things ... and to GIVE to others something that makes a difference for them. 🎶🎄 🎁🎁🎁🎁🎁🎁🎁
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🎄🎶 On the FIFTH day of Christmas we have been gifted with INFLUENCE ... to ASK for what we need and want ... to CHALLENGE people to think differently ... to TEACH people to think differently ... to MODEL for people a new way of believing and doing things ... and to GIVE to others something that makes a difference for them. 🎶🎄 🎁🎁🎁🎁🎁🎁🎁

Repost By sfcfoundtn:  Our hearts go out to Stephen and Sally Damiani and family who tragically said goodbye to their beautiful son Massimo yesterday. Stephen is a true rare disease hero, having helped uncover his son Massimo’s rare disease, a form of Leukodystrophy. You may have seen Massimo’s story in 2013 on the ABC’s ‘Australian Story’ program aptly entitled ‘Cracking the Code’. This incredible family are pioneers in the gene technology space and have always been an inspiration! Our thoughts are with them at this sad time.
#missionmassimo #missionmassimofoundation #raredisease #hero #medicalresrarch #crackingthecode #leukodystrophy (via #appskottage.com #Grab @AppKottage)
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Repost By sfcfoundtn: Our hearts go out to Stephen and Sally Damiani and family who tragically said goodbye to their beautiful son Massimo yesterday. Stephen is a true rare disease hero, having helped uncover his son Massimo’s rare disease, a form of Leukodystrophy. You may have seen Massimo’s story in 2013 on the ABC’s ‘Australian Story’ program aptly entitled ‘Cracking the Code’. This incredible family are pioneers in the gene technology space and have always been an inspiration! Our thoughts are with them at this sad time. #missionmassimo #missionmassimofoundation #raredisease #hero #medicalresrarch #crackingthecode #leukodystrophy (via #appskottage.com #Grab @AppKottage)

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Here's the latest in the amino acid shortage from the American Society for Parenteral and Enteral Nutrition (ASPEN):⠀
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Find the link to the update on our Facebook page (link in bio) or go to Aspen's website.⠀
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#gusgear #ostomy ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
#ileostomy #colostomy #centrallines #tpnlife #chronicillness #shortgutsowhat #shortgutsyndrome #shortgut #broviac #hickman #TPN #sbs #raredisease #gastroparesis #HPN #PN #gastroschisis #hirschsprungsdisease #nec #invisibleillness #specialneedsmom #spoonie #medicalfamily #medicallycomplex #mito
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Here's the latest in the amino acid shortage from the American Society for Parenteral and Enteral Nutrition (ASPEN):⠀ ⠀ Find the link to the update on our Facebook page (link in bio) or go to Aspen's website.⠀ ⠀⠀ #gusgear #ostomy ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ #ileostomy #colostomy #centrallines #tpnlife #chronicillness #shortgutsowhat #shortgutsyndrome #shortgut #broviac #hickman #TPN #sbs #raredisease #gastroparesis #HPN #PN #gastroschisis #hirschsprungsdisease #nec #invisibleillness #specialneedsmom #spoonie #medicalfamily #medicallycomplex #mito

Festive fundraising at Cambridge station ❄️ Thank you to the wonderful Sing! community choir for supporting us today with their beautiful carol singing!
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#rarediseases #raredisease #fundraising #findacure #christmas #carols #cambridge
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Festive fundraising at Cambridge station ❄️ Thank you to the wonderful Sing! community choir for supporting us today with their beautiful carol singing! . . . #rarediseases #raredisease #fundraising #findacure #christmas #carols #cambridge

This kid is the definition of joy.
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#Repost from @asthecasemaybe - I love my life. I wake up happy every day (even if it’s 3am). Please don’t ever feel sorry for me, just step into my story and walk (or run) alongside me.
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#bethehero #projectalive #HunterSyndrome #mps2 #mpsii #raredisease #specialneeds #nba #basketball #ballerforlife #baller #juniorballer
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This kid is the definition of joy. . #Repost from @asthecasemaybe - I love my life. I wake up happy every day (even if it’s 3am). Please don’t ever feel sorry for me, just step into my story and walk (or run) alongside me. . #bethehero #projectalive #HunterSyndrome #mps2 #mpsii #raredisease #specialneeds #nba #basketball #ballerforlife #baller #juniorballer

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I love my life. I wake up happy every day (even if it’s 3am). Please don’t ever feel sorry for me, just step into my story and walk (or run) alongside me.
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#bethehero #projectalive #HunterSyndrome #mps2 #mpsii #raredisease #specialneeds #nba #basketball #ballerforlife #baller #juniorballer
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I love my life. I wake up happy every day (even if it’s 3am). Please don’t ever feel sorry for me, just step into my story and walk (or run) alongside me. . #bethehero #projectalive #HunterSyndrome #mps2 #mpsii #raredisease #specialneeds #nba #basketball #ballerforlife #baller #juniorballer

Thank you @himalayansaltytreasures for supporting our cause and helping us spread awareness! This #RedHandChallenge is truly introducing us to nice new accounts on social media and we feel very blessed! ❤️ Loving the creativity more and more ✋🏻 #erythromelalgia #raredisease #GirlonFire #thefirefightermom
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Thank you @himalayansaltytreasures for supporting our cause and helping us spread awareness! This #RedHandChallenge is truly introducing us to nice new accounts on social media and we feel very blessed! ❤️ Loving the creativity more and more ✋🏻 #erythromelalgia #raredisease #GirlonFire #thefirefightermom

CEO of @sanadeegbulk Mr Adnan supporting our cause and taking the #RedHandChallenge. On behalf of Lynn and our family thank you so much for helping us raise awareness. #erythromelalgia #raredisease #GirlonFire #thefirefightermom
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CEO of @sanadeegbulk Mr Adnan supporting our cause and taking the #RedHandChallenge. On behalf of Lynn and our family thank you so much for helping us raise awareness. #erythromelalgia #raredisease #GirlonFire #thefirefightermom

Saturday #Neurology #ataxia #HSP #SPG7 #raredisease checkup @HywelDdaHB #Glangwili #Hospital #Carmarthen New Consultant So repeat History
#Vacant #Cerebelum
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Saturday #Neurology #ataxia #HSP #SPG7 #raredisease checkup @HywelDdaHB #Glangwili #Hospital #Carmarthen New Consultant So repeat History #Vacant #Cerebelum

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Hoy nuestro Desafío ACTAYS en el mundo nos lleva a la fría Canadá, al  Parque Nacional de Jasper, en Alberta. Es el parque más al norte de las Montañas Rocosas. El parque está conformado por glaciares, lagos, cascadas y montañas. La fauna salvaje que se puede encontrar en el lugar incluye alces, renos, osos y caribúes. Forma parte del conjunto natural denominado Parque de las Montañas Rocosas Canadienses que fue declarado Patrimonio de la Humanidad por la Unesco en 1984.

En la foto, de fondo, se pueden ver las cataratas Sunwapta que tienen una caída de alrededor de 18,5 metros. Sunwapta es una palabra indígena que significa agua turbulenta. 
Gracias a nuestros conquistadores Patricia Fernandez Dominguez​ y Joan Vallespí Salvadó​ por estas frías pero maravillosas imágenes. #actays #curaparataysachs #enfermedadesraras #raredisease #terapiagenica #genetictherapy #investigación #research #dona #donate #causadeldia #causeoftheday #causadelmes #causeofthemonth #nonprofit #causes #dogood #philantropy #fundraising #socialcauses #haztesocio #bedonor
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Hoy nuestro Desafío ACTAYS en el mundo nos lleva a la fría Canadá, al Parque Nacional de Jasper, en Alberta. Es el parque más al norte de las Montañas Rocosas. El parque está conformado por glaciares, lagos, cascadas y montañas. La fauna salvaje que se puede encontrar en el lugar incluye alces, renos, osos y caribúes. Forma parte del conjunto natural denominado Parque de las Montañas Rocosas Canadienses que fue declarado Patrimonio de la Humanidad por la Unesco en 1984. En la foto, de fondo, se pueden ver las cataratas Sunwapta que tienen una caída de alrededor de 18,5 metros. Sunwapta es una palabra indígena que significa agua turbulenta. Gracias a nuestros conquistadores Patricia Fernandez Dominguez​ y Joan Vallespí Salvadó​ por estas frías pero maravillosas imágenes. #actays #curaparataysachs #enfermedadesraras #raredisease #terapiagenica #genetictherapy #investigación #research #dona #donate #causadeldia #causeoftheday #causadelmes #causeofthemonth #nonprofit #causes #dogood #philantropy #fundraising #socialcauses #haztesocio #bedonor

Why does Penny Bundy, MSU Board Treasurer and Inclusion Body Myositis patient, give to MSU? “MSU became my lifeline 3 years ago when I was first diagnosed with IBM. When my neurologist gave me the news that I had this very rare disease, he had little information and no help that he could offer. I spent endless hours over the next few weeks researching this disease, and the options I might have. I found little until I somehow stumbled onto the MSU website, and from there the Facebook support group. Being able to join the IBM support group was like turning on a floodlight in a dark room. In the first few weeks of interacting with other IBM patients in the support group, I learned more about my disease than I had in all of the research I’d done. I became part of a community that cares about and supports each member, a place where I can express myself freely, knowing I’m among others who understand my situation. The resources, education, and support that MSU provides each of us is invaluable. This is why I became involved as a volunteer, and why I will be standing first in line when there is an appeal for funds to keep MSU operating. It is the very least I can do for an organization that has provided so much for the Myositis community.” We hope you will give, too! UnderstandingMyositis.org/giving  #myositis #dermatomyositis #inclusionbodymyositis #necrotizingautoimmunemyopathy #giving4myositis #myositis #raredisease #inflammatorymyopathy Will you consider giving to MSU? UnderstandingMyositis.org
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Why does Penny Bundy, MSU Board Treasurer and Inclusion Body Myositis patient, give to MSU? “MSU became my lifeline 3 years ago when I was first diagnosed with IBM. When my neurologist gave me the news that I had this very rare disease, he had little information and no help that he could offer. I spent endless hours over the next few weeks researching this disease, and the options I might have. I found little until I somehow stumbled onto the MSU website, and from there the Facebook support group. Being able to join the IBM support group was like turning on a floodlight in a dark room. In the first few weeks of interacting with other IBM patients in the support group, I learned more about my disease than I had in all of the research I’d done. I became part of a community that cares about and supports each member, a place where I can express myself freely, knowing I’m among others who understand my situation. The resources, education, and support that MSU provides each of us is invaluable. This is why I became involved as a volunteer, and why I will be standing first in line when there is an appeal for funds to keep MSU operating. It is the very least I can do for an organization that has provided so much for the Myositis community.” We hope you will give, too! UnderstandingMyositis.org/giving #myositis #dermatomyositis #inclusionbodymyositis #necrotizingautoimmunemyopathy #giving4myositis #myositis #raredisease #inflammatorymyopathy Will you consider giving to MSU? UnderstandingMyositis.org

Help create awareness for a rare disease #erythromelalgia where the person is suffering from #burninghands. 
2 people, one of whom is a young child, are going through this syndrome for a very long time now, and we're all praying for a cure. .
I nominate for the #redhandchallenge  @a_t_accessories4u  @bakeacakebynosh1 @sandandsouldubai 
@minibooteek 
@yamnanaveedkhan @colorsplashwithsama 
@happygreylucky 
@omayazein 
@peaceloveand_oil .
to paint your hand red, or some form of creativity, post your picture, and use the # below. .
Don't forget to nominate a few people too.

@thefirefightermom @taniasinger1
#raredisease #Burninghands #burning4hope #defyingpain #hope #cure #EMcure #EMwarriors #girlonfire #redhandchallenge #warriorprincess #togetherwecan #thefirefightermom
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Help create awareness for a rare disease #erythromelalgia where the person is suffering from #burninghands. 2 people, one of whom is a young child, are going through this syndrome for a very long time now, and we're all praying for a cure. . I nominate for the #redhandchallenge @a_t_accessories4u @bakeacakebynosh1 @sandandsouldubai @minibooteek @yamnanaveedkhan @colorsplashwithsama @happygreylucky @omayazein @peaceloveand_oil . to paint your hand red, or some form of creativity, post your picture, and use the # below. . Don't forget to nominate a few people too. @thefirefightermom @taniasinger1 #raredisease #Burninghands #burning4hope #defyingpain #hope #cure #EMcure #EMwarriors #girlonfire #redhandchallenge #warriorprincess #togetherwecan #thefirefightermom

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و#مساء_الجمال من #آية_الجمال من #أجمل_وطن و #أغلى_بلد 
#عيدي_يا_بلادي

#مساؤكم_بحريني 🇧🇭🇧🇭 #في_حب_البحرين #اليوم_الوطني 🇧🇭🇧🇭❤️❤️❤️ .
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في عمر 7 سنوات و 9 شهور
بتاربخ 16-12-2017
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ملاحظة .. والله عارفة انه الاغاني حرام 😊 .. هاذي اغنية فلتر في السناب بمناسبة اليوم الوطني .
#happy_national_day 🇧🇭🇧🇭❤️❤️
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at the age of #7_years 
#ayah #ncl #Neuronal_ceroid_lipofuscinosis #ncl7 #batten #bahrain #brain  #rare_disease #raredisease .
#آية #ريحة_الجنة #البحرين
#حبيبة_أمها #جمال  #وراثة #الدماغ #الأمراض_النادرة  #مرض_نادر #باتن
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.. و#مساء_الجمال من #آية_الجمال من #أجمل_وطن و #أغلى_بلد #عيدي_يا_بلادي #مساؤكم_بحريني 🇧🇭🇧🇭 #في_حب_البحرين #اليوم_الوطني 🇧🇭🇧🇭❤️❤️❤️ . . في عمر 7 سنوات و 9 شهور بتاربخ 16-12-2017 . ملاحظة .. والله عارفة انه الاغاني حرام 😊 .. هاذي اغنية فلتر في السناب بمناسبة اليوم الوطني . #happy_national_day 🇧🇭🇧🇭❤️❤️ . . at the age of #7_years #ayah #ncl #Neuronal_ceroid_lipofuscinosis #ncl7 #batten #bahrain #brain  #rare_disease #raredisease . #آية #ريحة_الجنة #البحرين #حبيبة_أمها #جمال  #وراثة #الدماغ #الأمراض_النادرة  #مرض_نادر #باتن

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GODSPEED | journey | blessing | protection | 💜 My husband surprised me with @alexandani exclusive December Art Infusion Set, perfectly themed Godspeed. “In Old English, ‘godspeed’ was the word one said to bless someone embarking on a journey. The expression bestows good fortune and safety, with God's grace. Magically sincere, godspeed is the desire to have God's protection alongside your path.” As many know the path and journey we (God willing) are about to embark on, there could not have been a more fitting set/message for me, as we pray for protection and blessings moving forward. Godspeed 💜
Love you @iaming1314 #loveofmylife  #luckywifey #thengs #jordanssquad #favoritesquadmember 💜💜#JordansJourney #ourjourney #godspeed #journey #blessing #protection #longhoodeddress alexandani #artinfusion #december #prayers #intestinaltransplant #transplant #cipo #cipoawareness #motilitydisorder #tpn #tpndependent #ostomate #ileostomy #healthjourney #insicknessandinhealth #chronicillnessfighter #raredisease #invisibleillness #silentillness
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GODSPEED | journey | blessing | protection | 💜 My husband surprised me with @alexandani exclusive December Art Infusion Set, perfectly themed Godspeed. “In Old English, ‘godspeed’ was the word one said to bless someone embarking on a journey. The expression bestows good fortune and safety, with God's grace. Magically sincere, godspeed is the desire to have God's protection alongside your path.” As many know the path and journey we (God willing) are about to embark on, there could not have been a more fitting set/message for me, as we pray for protection and blessings moving forward. Godspeed 💜 Love you @iaming1314 #loveofmylife #luckywifey #thengs #jordanssquad #favoritesquadmember 💜💜#JordansJourney #ourjourney #godspeed #journey #blessing #protection #longhoodeddress alexandani #artinfusion #december #prayers #intestinaltransplant #transplant #cipo #cipoawareness #motilitydisorder #tpn #tpndependent #ostomate #ileostomy #healthjourney #insicknessandinhealth #chronicillnessfighter #raredisease #invisibleillness #silentillness

🔝 Day 6 - #Dietbet / -359 days A long way to go #KeepGoing ✌
#Hypothyroidism #TINU #RareDisease  #KidneyDisease
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🔝 Day 6 - #Dietbet / -359 days A long way to go #KeepGoing#Hypothyroidism #TINU #RareDisease #KidneyDisease

This girl knows how to push every single one of my buttons.  Then there are moments like these when she is quietly sitting next to me working really hard.  She is a very special little girl.  I am noticing changes in her vision and it hurts my heart ❤️. What I wouldn't do to keep her from losing her vision. #bbs #lowvision #raredisease #adoption #bigfamily
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This girl knows how to push every single one of my buttons. Then there are moments like these when she is quietly sitting next to me working really hard. She is a very special little girl. I am noticing changes in her vision and it hurts my heart ❤️. What I wouldn't do to keep her from losing her vision. #bbs #lowvision #raredisease #adoption #bigfamily

Our snowman has turned into a (leafy and muddy!) snow swan! ⛄️😀 @swanchildrenuk #undiagnosed #swanuk #raredisease #rarediseaseday #raregeneticcondition #sendbloggers #sendblogger #senblog
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Our snowman has turned into a (leafy and muddy!) snow swan! ⛄️😀 @swanchildrenuk #undiagnosed #swanuk #raredisease #rarediseaseday #raregeneticcondition #sendbloggers #sendblogger #senblog

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