raredisease

Pictures about raredisease

• 27 Maret 2017
Update hasil konsultasi dengan dokter gizi adalah takaran minum Noam dinaikan menjadi 120ml per sekali minum dengan frekuensi 8x minum dalam 24 jam. Mudah-mudahan lambung Noam kuat dan ga ada drama muntah lagi. Aminnn 🙏🙏🙏🙏 .
Malamnya Noam konsultasi dengan spesialis gastro, dr Hanifah Oswari mengenai muntah Noam
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Dan berikut percakapan dokter, mommy & daddy Noam
👨‍⚕️: sudah berapa lama Noam pakai NGT? .
🙍🏻: 4 bulan, dok
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👨‍⚕️: saya tidak sarankan pakai NGT lebih dari 3 bulan, karena NGT dapat memicu produksi lendir lebih banyak & ujung NGT yang masuk ke lambung bisa melukai dinding lambung. Saya sarankan pakai PEG ( Percutaneous endoscopic gastrostomy)
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🙍🏻: yang dilubangin dari perut, dok? .
👨‍⚕️: Iya, bentuknya selang seperti ini (sambil googling & kasih liat dari layar komputer) nanti kalau sudah 2 bulan diganti dengan mickey button seperti ini (googling lagi & kasih liat gambar) .
🙍🏻‍♂️: itu aman ga sih, dok? Bisa bocor ga? .
👨‍⚕️: aman, pak. Dibawa berenang aja bisa ga akan bocor. Gantinya sekitar 3 bulan sekali aja, ga seperti NGT
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🙍🏻: kalau pasangnya di ruang operasi ya, dok? .
👨‍⚕️: iya di ruang operasi, bu jadi harus di RS. Ada asuransi ga? .
🙍🏻: adanya BPJS, dok
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👨‍⚕️: Kalau begitu di RSCM aja, bu. Biar bisa pakai BPJS
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🙍🏻: berarti saya harus minta rujukan dulu, dok supaya bisa operasi di RSCM karena selama ini rujukan Noam cuma ke Harapan Kita
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👨‍⚕️: ya udh, bu. Minta rujukan aja dulu
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Dan sepertinya Noam akan segera masuk ruang operasi lagi untuk pasang PEG ☹️☹️
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Salah satu alasan mommy & daddy setuju Noam pasang PEG, adalah selain alasan yang disebutkan dokter, alasan lain adalah mommy Noam pernah dengar dari salah satu mommy bahwa di Singapore pun tidak boleh pakai NGT lebih dari 3 bulan, jadi kalau sudah lebih dari 3 bulan, pasti akan diganti ke PEG. Jadi daripada nanti saat Noam berobat ke Singapore harus operasi pasang PEG disana kan lebih baik sudah pasang dulu disini karena biaya operasi disana pasti lebih mahal, padahal kalau disini bisa ditanggung oleh BPJS
#denzelnoamgunawan #5m13d #sticklersyndrome #pierrerobinsequence #laryngomalacia #specialneeds #specialneedsbaby #littlewarrior #strongbaby #raredisease insta topsy.oneWhen you rush to the closest Emergency Room🏥because your baby is shaking from having 103deg fevers🤒 at 1am but the security guards take 5-ever to check all your bags and stroller (because yeah, weIf youHey everyone! Today is the first day of my new #medicationseries which will be featured here daily on my Instagram account. 💊 For more information about this series, check out my 2nd to most recent most.
The first medication to be featured is Gabapentin. If you have tried this medication, please use the comment section below to share your experiences with it. ⬇️
*Remember that no 2 potsies are the same and although one may experience terrible side effects with one medication, that same medication might be a lifesaver for others* 
My experience: I am currently on 100mg 3x a day for nerve pain. I have been informed that this is a tiny dose but IPlease help us celebrate HunterMia, Isla & ladybug. These two rockstars were diagnosed with their RARE conditions in the same month and live just around the corner from each other and attend the same school in the same year. Please read Isla and her familyو#صباح_السهرانين طول الليل بدون نوم بدون ما نعرف السبب 😌 ،، والجميلة مواصلة من امس للحين .. وفرحانة لأن الدكتور قال بيطلعها رخصة اليوم 😍😍
.  #نعم_الله #آيتي 🌷
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في عمر 7 سنوات وشهر
بتاربخ 27-03-2017
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#good_morning🌹
doctor said she can be discharged today 😄
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 at the age of #7_years 
#ayah #ncl #Neuronal_ceroid_lipofuscinosis #ncl7 #batten #bahrain #brain  #rare_disease #raredisease  #gift_from_god .
#آية #ريحة_الجنة #البحرين
#حبيبة_أمها #جمال  #وراثة #الدماغ #الأمراض_النادرة  #مرض_نادر #باتن  #عطايا_الله insta topsy.oneThe 3D CT scan of a 70-year-old Algerian women with a fetus that was inside her for over 30 years! 
This extremely rare phenomenon is called Lithopedion, which means "stone baby". It occurs most commonly when the fetus dies during an abdominal pregnancy, and has been retained by the mother.
That fetus was too big to be reabsorbed by the body, and subsequently calcified on the outside as part of a maternal foreign body reaction, shielding the motherBeing a migraine warrior in the broadcasting industry is hard, so IWarning - rant ahead. 😡 So I think my tube might have migrated, but II💚Kayden
#TeamKayden #ClovesSyndrome #PushForKayden #Pik3ca #Vandy #OurWeeklyStop #Therapy #BillWilkersonCenter #SpecialNeedsMommy #RareDisease insta topsy.oneLucky Kid! @cbsfilms gave @lucasthorkelley his own trailer while filming @patriotsdayfilm insta topsy.oneWe held an online @lularoe #fundraiser for a little girl in #michigan with#gm1gangliosidosis #AvaMarie #raredisease .  I love watching our #lularoefundraisers come together!  AvaNoah - #gaucherdisease #IanMohon #beyondthediagnosis #rarediseaseuntd #raredisease #paintings #portrait #contemporaryrealism #portraitartist #portraitures #portraitpainting #artworks #fineartist #artistsoninstagram #art #lookingforartists insta topsy.oneNew blog post up! There have been recent studies linking the genetic condition that I have (Gaucher Disease) with Parkinson’s disease. I thought that this would be a great opportunity to talk about the fact that our genes do not necessarily determine our life and how through a healthy diet and lifestyle, we can combat those genetic predispositions. I give some information on how our current environment is full of certain pesticides and nerotoxins that have been shown to cause Parkinson’s and I also talk about steps that you can take individually to help lessen your own exposure to these toxins. I find all this really interesting,  so I would love to get some feedback on if this was educational for anyone or any other topics that would be interesting to hear about. :) insta topsy.oneOh hey! LetWOW!!! You guys rock!! A HUGE Thank You! To everyone who nominated 💜Cure Sanfilippo Foundation💜 to receive President @realdonaldtrump salary.  We were ranked 5th overall which is AMAZING!!! We cannot do this alone but with your help we are hopeful that we find a cure for these children and give them the chance at life they deserve!!! HereHeartfelt thanks to the @celtics & @rareundiagnosed for giving #cdg advocate Liam and his family a @nba experience bringing awareness to the #1in10 with #raredisease ! ☘️💚☘️#positivelypossible insta topsy.one1rst stop: San Francisco 
2. Stanford university for doctors appointments 
3. Los Angeles for the Day of Hope Cystinosis conference! 
To clarify, flying to California for appointments is NOT a vacation. • •  #spoonie #chronicillness #chronicpain #invisibleillness #autoimmunedisease  #raredisease #fatigue #hypothyriodism #chronickidneydisease #SEB #brokenarm #castlife #invisibledisability #spoonielife #spooniestrong #chronicfatigue #chronicallyill #chroniclife #stanford #sanfrancisco #california #mentalhealth #mentalillness #anxiety #depression #educate #advocate #nofilter #goldengatebridge insta topsy.oneHey everyone! Today is the first day of my new #medicationseries which will be featured here daily on my Instagram account. 💊 For more information about this series, check out my 2nd to most recent most.
The first medication to be featured is Gabapentin. If you have tried this medication, please use the comment section below to share your experiences with it. ⬇️
*Remember that no 2 potsies are the same and although one may experience terrible side effects with one medication, that same medication might be a lifesaver for others* 
My experience: I am currently on 100mg 3x a day for nerve pain. I have been informed that this is a tiny dose but IGhosted a poem by Anna Werrun. If you are chronically ill you maybe able to relate to this, being ghosted hurts. You arenGo Max! I tried to snap him doing a timed run test at his neuromuscular appointment yesterday but he whizzed right past me before I had time to focus. Not only that, he shaved 6 seconds off his previous time! Go kiddo! 
#duchenne #DMD #musculardystrophy #cargobike #maxsbigride #nevergiveup #father #son #family #research #cure #raredisease #uoft #utm #hamont insta topsy.onePlease join @globalgenes, #Everylifefoundation, and others in the #RareDisease Community for #RAREontheRoad! This leadership series will bring important insights and timely discussion to rare disease patients. 
Register now at: GlobalGenes.org/LeadershipTour

#CareAboutRARE #spoonie #hope #advocate #inspire #Educate #rare #invisibleillness #chronicillness #globalgenes insta topsy.oneMy sons dinner this night. Beef of beetroot with fried onions, cassava and sauce. #yummi #cooking #pkulife #pku #lowprotein #lowproteindiet #lowproteinlifestyle #raredisease insta topsy.one#transformationtuesday is for this sweet little angel 😇and mascot for Little D on the Monocacy, Little D! He transforms the lives of everyone who knows his journey, touching our 💗s with his strength, perseverance, and smile! #mldwarrior #rayofsunshine #heartoftherace #sweetsmiles #littleangel #littledsbucketlist #littledonthemonocacy #littledonthemonocacyfamily #metochromaticleukodystrophy #leukodystrophyawareness #leukodystrophy #raredisease #notsorare #transformation #pickupapaddle #rowrowrowyourboat #kayakforacause #canoeforacause #paddleforacause #kayak #canoe #paddle #race #frederickmd #monocacyriver insta topsy.oneAfter months of hard work, the Spring issue of COMMUNITY magazine is out and free to read for everyone on our website! This issue is all about #caregiving, the daily struggles and rewards of #caregivers, and more!

#community #magazine #publication #digitalpublishing #chronicsickness #chronicillness #raredisease #patient #patientassistance #financialaid #spoonie insta topsy.oneEvery year, the SRF brings together its scientific advisors, funded investigators and selected applicants for a day and a half of scientific presentations, critiques, brainstorming and collaboration. This unique meeting is at the forefront of advancing and accelerating #scleroderma research. insta topsy.one

Best tweets:

Santé & Bien être 27/03/2017 08:18
#sante : Advicenne leve 16 M€ contre les maladies renales bit.ly/2ntAzcY   #health #biotech #raredisease bit.ly/2naNL4d   v…

(CercleFinance.com) - Roche said on Friday that it had won breakthrough therapy designation from the US Food and Drug Administration for a treatment against pemphigus vulgaris, a rare but life-threatening condition.
Gamuts 22/03/2017 08:35
#Radiology of X-linked immune dysregulation - polyendocrinopathy - enteropathy gamuts.net/x/34781   #RareDisease #MedEd #FOAMrad
The Chronic Advocate 23/03/2017 07:07
Fiona Copeland 28/03/2017 09:40
@UHSHeroes Well done! So proud of you all #pcd #raredisease
nicola whitehill 28/03/2017 05:11
@ben4bath Great speech and outcome today Thank You #RareDisease @rarediseaseuk #diagnosis #cordinatecare #research #innovativemedicines
Rare Disease UK 28/03/2017 04:48
Thank you @ben4bath for all your hard work championing #raredisease patients & securing an implementation plan for England! Fantastic result
http://pic.twitter.com/IpMSkp8LpO
Thank you @ben4bath for all your hard work championing #raredisease patients & securing an implementation plan for England! Fantastic result <br>http://pic.twitter.com/IpMSkp8LpO
Sue Farrington 28/03/2017 04:32
@ben4bath thanks from @WeAreSRUK for UK #RareDisease Westminster debate and gaining clarity on implementation plan for England
Sue Farrington 28/03/2017 04:16
Westminster debate calls for update from Minister on lack of implementation plan for #RareDisease strategy in England @WeAreSRUK
Sue Farrington 28/03/2017 03:57
UK #RareDisease Westminster debate - no one should be disadvantaged due to rarity of their disease @WeAreSRUK
Robert Selliah 28/03/2017 02:57
See americanmedchem.org/assets/docs/AM CBrochure2017.pdf   … #Meds4Kids invite to #collaboration #research #medicine #children #raredisease #childhoodcancer #philanthropy
http://pic.twitter.com/RAYvsalTCq
See  http:// americanmedchem.org/assets/docs/AM CBrochure2017.pdf   …  #Meds4Kids invite to #collaboration #research #medicine #children #raredisease #childhoodcancer #philanthropy<br>http://pic.twitter.com/RAYvsalTCq
CIRM 28/03/2017 02:30
Pioneering #stemcell #genetherapy from @UCLAstemcell cures infants with bubble baby disease. #SCID #raredisease bit.ly/2nr49OG  
http://pic.twitter.com/KkEesmjd11
Pioneering #stemcell #genetherapy from @UCLAstemcell cures infants with bubble baby disease. #SCID #raredisease  http:// bit.ly/2nr49OG     <br>http://pic.twitter.com/KkEesmjd11
Rare Disease UK 28/03/2017 01:55
At 4.30 today, MPs will debate the implementation of the UK Strategy for Rare Diseases @ben4bath https://www. raredisease.org.uk/our-work/why-e ngland-needs-an-implementation-plan-for-the-uk-strategy-for-rare-diseases-2017/   … #raredisease
http://pic.twitter.com/c4IU8dnooF
At 4.30 today, MPs will debate the implementation of the UK Strategy for Rare Diseases @ben4bath  https://www. raredisease.org.uk/our-work/why-e ngland-needs-an-implementation-plan-for-the-uk-strategy-for-rare-diseases-2017/   …  #raredisease <br>http://pic.twitter.com/c4IU8dnooF
Yoni Maisel - CVID 28/03/2017 12:15
Curative Power of The Cord: #Cancer + 80 Disorders! http://www. independent.co.uk/news/long_read s/cancer-treatment-umbilical-cord-blood-donation-mosaic-a7651891.html   … #SNRTG #BigData #RareDisease #biotech #science #ChildhoodCancer
http://pic.twitter.com/97P0lUhGo9
Curative Power of The Cord: #Cancer + 80 Disorders!  http://www. independent.co.uk/news/long_read s/cancer-treatment-umbilical-cord-blood-donation-mosaic-a7651891.html   …   #SNRTG #BigData #RareDisease #biotech #science #ChildhoodCancer<br>http://pic.twitter.com/97P0lUhGo9
Tillypops™ 28/03/2017 09:06
Can you help me retweet my sponsored hair cut for charity http://www. vasculitis.org.uk/events/kyri-20 17-03   … #Tillypops #donate #helpinghand #help #RareDisease
http://pic.twitter.com/0ZT0wh9Qse
Can you help me retweet my sponsored hair cut for charity  http://www. vasculitis.org.uk/events/kyri-20 17-03   …  #Tillypops  #donate #helpinghand #help #RareDisease <br>http://pic.twitter.com/0ZT0wh9Qse
Yoni Maisel - CVID 28/03/2017 08:35
#Genomics Opening Doors for Tx of Rare Cancers today.uconn.edu/2017/03/scient ists-pave-path-tackling-rare-cancers-without-effective-treatments/   … #SNRTG #BigData #RareDisease #ChildhoodCancer #biotech #science #tech
http://pic.twitter.com/ydqQC2Dr6F
#Genomics Opening Doors for Tx of Rare Cancers  http:// today.uconn.edu/2017/03/scient ists-pave-path-tackling-rare-cancers-without-effective-treatments/   …  #SNRTG #BigData #RareDisease #ChildhoodCancer #biotech #science #tech<br>http://pic.twitter.com/ydqQC2Dr6F
Rare Disease UK 27/03/2017 10:50
We need your help. Please e-mail your MP about the Westminster Hall Debate on #raredisease TOMORROW so they attend https://www. raredisease.org.uk/news-events/ne ws/we-need-your-help-westminster-hall-debate-on-the-uk-strategy-for-rare-diseases/   …
http://pic.twitter.com/IhlGR10df8
We need your help. Please e-mail your MP about the Westminster Hall Debate on #raredisease TOMORROW so they attend  https://www. raredisease.org.uk/news-events/ne ws/we-need-your-help-westminster-hall-debate-on-the-uk-strategy-for-rare-diseases/   … <br>http://pic.twitter.com/IhlGR10df8
Yoni Maisel - CVID 26/03/2017 11:13
Biotechnology Is Cool...Very "Bloody" Cool! http://www. bbc.com/news/health-39 354627   … #SNRTG #BigData #RareDisease #blood #science #tech #biotech #technology
http://pic.twitter.com/Mom5iBtzOJ
Biotechnology Is Cool...Very "Bloody" Cool!  http://www. bbc.com/news/health-39 354627   …  #SNRTG #BigData #RareDisease #blood #science #tech #biotech #technology<br>http://pic.twitter.com/Mom5iBtzOJ
LUPUSUK 24/03/2017 10:43
UK #RareDisease debate happening next Tuesday in Parliament, and we need your help! Ask your MP to attend. More info bit.ly/RAIRDA  
http://pic.twitter.com/tCIPojmgNR
UK #RareDisease debate happening next Tuesday in Parliament, and we need your help! Ask your MP to attend. More info  http:// bit.ly/RAIRDA     <br>http://pic.twitter.com/tCIPojmgNR
Yoni Maisel - CVID 24/03/2017 08:56
The #GeneTherapy Born In a Veterinary Hospital abc3340.com/news/fighting- for-you/a-cure-for-clara-research-on-cats-at-auburn-vet-college-may-hold-the-key   … #SNRTG #BigData #RareDisease #science #tech #technology #biotech #DNA
http://pic.twitter.com/scmypRBUj4
The #GeneTherapy Born In a Veterinary Hospital  http:// abc3340.com/news/fighting- for-you/a-cure-for-clara-research-on-cats-at-auburn-vet-college-may-hold-the-key   …  #SNRTG #BigData #RareDisease #science #tech #technology #biotech #DNA<br>http://pic.twitter.com/scmypRBUj4
Scientific Chick 23/03/2017 06:03
Members of the #RareDisease community! If I was interested in your views about #PatientEngagement, would you prefer sharing through:
Read More on Twitter