Would love to hear Some positive stories from people with Alagille Syndrome ...

[Dina1986]

Hi everyone! My daughter is most probably having Alagille syndrome, can't stop reading things on internet, statistics, stories and other things which make me feel very upset, looks like life expectancy outcome for Alagilles with native liver isn't so high. Is there anyone, especially adults who could share their stories? I know that the disorder is very variable, but anyway would love to hear from you people 🙏🏻🙏🏻🙏🏻 thanks a lot ❤️️

All the statistics are so different from each other, some say only 5% need liver transplant other researches tell completely different numbers, doctors aren't helpful neither and what is the life after liver transplant for an adult? What is an outcome ? Just need some support and reason to start thinking positive, can't live in this sadness anymore .

[Carvellkm]

Hi if you request to join liver mums on Facebook you will be able to find and speak to lots of other people who are in a similar situation. I can't offer any advice as my son has a different type of liver disease but im sure someone on liver mums will be able to.

[Dina1986 in reply to Carvellkm]

Thank you

[Dina1986 in reply to Carvellkm]

Tried to join liver mums on facebook but sadly they just keep cancelling my request ...thanks anyway

[Carvellkm in reply to Dina1986]

See if you can message admin, there is another group uk liver parents and families.

[Dina1986 in reply to Carvellkm]

Message isn't optional

[Caitlin-CLDF Partner CLDF]

Hi Dina1986 , if you haven't seen the CLDF Alagille leaflet or information page do have a look, there's bits about treatment and associated symptoms on there (childliverdisease.org/Infor...

We also have a number of stories from Alagille families on our website (childliverdisease.org/blogs... which might give you an insight into life with Alagille syndrome, and also stories from transplant families (childliverdisease.org/blogs...

[Dina1986 in reply to Caitlin-CLDF]

Thanks, will have a look 👀

[Laura-k]

Hi I'm not really what your asking for but since you haven't got any replies I thought I'd say hi! My one year old is currently on the transplant list due to a different condition to your little girl however. All I can tell you is that he is currently living life to the full and doing everything a one year old should and we intend to carry on. After transplant he will be on drugs that will suppress his immune system and will need check ups but he can still do what ever he wants to do I know of transplant people who go traveling etc.

[Dina1986 in reply to Laura-k]

Thanks a lot for your reply Laura, much appreciated 🙏🏻 I hope your little one will get his new liver soon and be the happiest boy in the world ❤️️

[ConsMum]

Hi Dina. I just replied to you on another post and then saw this one.

(Just an aside, if you ask to join the liver mums UK group the admin usually sends a message before adding anyone. If you haven't seen a message it may have gone to your message requests folder. There are also Alagille groups on fbk)

My son is now 18. He was diagnosed at 8 weeks old and he did need a transplant which he had at 22 months old. You asked about life post transplant - my son has been to beavers, cubs, scouts and until recently was a young leader helping with the cubs. He has volunteered and run at our local parkrun for the last few years. He has been on CLDF residential events, and to post transplant events with Transplant Sport. He has been on school trips and PGL activity holidays and took part in NCS (scheme for 16/17 year olds) Last year he did a skydive for charity and this weekend he is moving to university. Life is good and for the most part completely 'normal' (whatever that means! 😉)

I always recommend meeting others if at all possible. I think it's important for the child/young person, the parents and any siblings to meet other people that understand and to build friendships & support networks. If you're in the UK CLDF events are a good way to meet others and have fun.

Best wishes, Jo

[Dina1986 in reply to ConsMum]

Thank you ! It gives us so much hope, i was completely shocked when doctors told me what my baby has liver disease, but now it feels that everything is going to be ok, and baby still can lead normal life even after liver transplant if needed 💖

[Hidden in reply to ConsMum]

such an amazing and uplifting comment and experience ❤️

doctors suspect of Alagille for my 5week old baby. As Dina, I am also now in "that phase". I feel lost.

Although I have hopes it is not this the problem, at the same time, I am very scared. GGT levels and bilirubin where very high so he was already medicated. My baby has issues im the heart, but they did not find issue on the vertebra or on the eyes (the two other non-clinic signs).

Sorry to ask, did your son have heart issues as well?

I cannot even think so far as a transplant (if he has this syndrome and if one day he needs the transplant), due to the heart problems. On top of it he is O neg blood type.

I'm trying to remain positive and think about heart and liver as isolated problems.. this is all very scary.

Anyway, all you describe about your son ❤️❤️❤️ what a beautiful soul, strong and kind and intelligent man he is. Congratulations.

[Dina1986 in reply to Hidden]

My daughter has AB neg blood type, I wondering if most of alagilles have negative❌type

[Hidden in reply to Dina1986]

I don't think it's related, at least never read about that. Anyway.. In case one day is needed (hopefully not) it will be quite difficult to deal with since blood type O negative is rare.

[Hidden in reply to Hidden]

was your babh already diagnosed? I am still hoping for a negative.. eye test and vertebra x-ray came negative, but pediatrician didn't rule it out yet and still thinks it is. I am always thinking his heart issues (hole) can be from family, since my husband's family have 3 cases. I truly hope issues are isolated. But anyway, there is a liver issue and no diagnosis so far.. blood tests (bilirubin and GGT) indicates it has to do with bile ducts, but it is not for sure.

[Dina1986 in reply to Hidden]

Not yet diagnosed, genetic testing takes some months to complete. She doesn't have butterfly vertebrae, but I think they found something in her eye, heart issues also, pulmonary stenosis, bili and GGT still over limit, poor growth too...she is very petite for her age and was born little, how big is your baby? Did bili level dropped already?

[Hidden in reply to Dina1986]

sorry i didn't answer before.. it has been a roller coaster. my baby is almost 6weeks. he is now in the intensive care unit because his heart had a failure. i already wrote on my post, don't know if you can see it. GGT and bilirubin levels drop down on its own. doctors now said they understoodeverything was connected with heart defects and everything started to worsen and we were focusing on liver only which was wrong. liver disease was now ruled out has the ggt was below 800 (600). so all is connected with heart, and they found another defect in Aorta which usually appears only after some weeks old... it's happening and they have to fux it asap.. so an open heart surgery will come soon for my little one and we are hoping and believing that everything will be alright ❤️

they are keeping hunt regarding genetics and rare syndrome assiciated to heart abnormalities.and I am praying 🙏🏻❤️ that's all I can do.

Wishing my baby and your baby as well to be free of syndromes 🙏🏻❤️

[Dina1986 in reply to Hidden]

Sorry to hear that darling, I wish your family all the best and hope your little one will get better soon 🙏 to pray is all we can do in this kind of situation, but remember all is going to be ok 🙏 its just a bumpy start ❤️ stay strong and positive . Send you lots of love and support .xx

[ConsMum]

Sorry, just saw another post where you said you're in Australia? There is a US fbk group called LiveR which has more international families in it, a lot from the US but also quite a few from Australia I think.

Sorry the info about CLDF events won't be much use to you but if you can make contact with others online at least hopefully that will be some support.

Bw Jo

[Dina1986 in reply to ConsMum]

I am from Sunshine Coast, not many alagilles are around here, our paediatrician have never seen one in his entire life, but I hope to find some in Brisbane, which is only 150 km away ...

Found some people on in instagram, sent them messages, but no answer yet.

[XIULI in reply to Dina1986]

You should check her out on m.facebook.com/thealagilles...

Lives in Melbourne

[Dina1986]

Hi Clara, unfortunately alagille syndrome as many other liver diseases doesn't have cure yet...but thanks anyway ...

[Dina1986]

Hi Clara, unfortunately alagille syndrome as many other liver diseases doesn't have cure yet...but thanks anyway ...

[JoshSamson]

Hi There this is a tad different from the other replies due to the fact that i am a kid that has Alagille Syndrome. it took me a long time to find a way to spell it. but i discovered this chat & i decided to reply. I just wanted to say that after my original operation i haven't had another operation (but that was because my body was healthy) I do want to say a few things that i have to say about my experience with the syndrome such as it's not the best to push myself i did do soccer for a year & it was very hard to keep up with the other's. there's at first seems ti be alot of medicine that i had to take for my liver & heart but now i only have to take one that's for scratching as in people with Alagille syndrome tends to scratch there body alot causing scabs on their skin because of the liver but there is medicine for that. But to be honest there little difference then that of a normal child I've experienced most of my life great & happy playing with the normal kids & they treat me as the same. I have notice due to i having it & another friend that has alagille is that we both have Asperger's (a kind of autism) that has a low attention span that has made it difficult in school (just saying incase that's common with people that have alagille. This is long (sorry about that) but i just wanted to tell you how i experienced it.

[Dina1986 in reply to JoshSamson]

Thanks a lot Josh, much appreciated! I am so happy to hear from someone who had experienced it! Hard to make any prognosis at the moment, coz my daughter is still very little , only 11 months old, but I hope she will also be able to have friends and play sports just like you do! How old are you? Do you sill itch? Does it get easier with age to live with alagille ? I have so many questions to ask! Thank you so much! You made my day !!!