Thank you for sharing your story with us... I was diagnosed with primary HLH. I'm going on 7 years now. Your story gave me strength to keep fighting, thank you and god bless you.
That was such a beautiful story! I unfortunately had a friend pass away from HLH when he was almost 13 at the time just like me. I also have a friend who's brother survived it. Hlh is definitely fatal but God has amazing plans for you alexis! So happy for you beautiful!
i loved seeing you story. i was also diagnosed with HLH in 2015. it sure is something that just comes out of nowhere. its great to see how well you are doing
The shackles on her wrist, the sticky pads on her head, brings back memories. I was too diagnosed with HLH. Was in ICU for 7 days and 14 more days in the hospital and was finally released. Having to learn how to walk again, or trying to write my name for the first time while my hand shaking. I just thank God after a month of being released there were no more traces of the HLH in my body. I pray that she lives long and lives for God. Amen
Thank you for sharing your story. I was diagnosed with Familial HLH in 2012 at the age of 34. I am now 40yrs old and healthy with no signs of relapse. Dig deep and have faith. 100% recovery is possible
Good to hear that diagnoses worked well for you. my wife was currently suspected to have Familal HLH and doctors have planned to cure it with steroids, etoposide and Bone Marrow transplant. Do you mind if i ask what kind of treatment was given to you. Thanks
Hi Alexis! I am so glad to see that you are in remission and back at school. I am also a student at Kent state, and histiocytosis had been a large part of my life for the past 10 years. My 12 year old brother Eli has been battling with langerhans cell histiocytosis for most of his life. He is in his third remission as of 6 months ago. This disease has taken, but it has given even more. Strength, faith, and positivity has blessed our family and friends who have supported us through everything. And it seems as if it has done the same for you :) Thank you for sharing your story! -Liyana
+Liyana Asmar Wow! I know how much battling histio was for several months, I can only imagine doing that for most of my life. Your family and your brother must be so incredibly strong! That is amazing that he is in remission, I pray that he continues to experience healing and health!! I would love to meet you sometime! Thank you so much
Had never heard of HLH until my 16 year old cousin was diagnosed. so glad that you are doing great. As I often share with family and friends, "TRUST GOD'S PLAN"
Im crying sooo hard watching your video sweetheart....2 days ago from this posting im making my mom who lives near you judging by the kent state banner .......passed away ...she was 60. She had type 1 HLH with ALF. Im 1,200 miles from home where she was. I wasnt there with her but my brothers and sisters were by her bedside for those last couple days. They told me on the phone as well as Drs said that it was the most violent and painful passing they have seen . im a military Veteran and I've seen pain and suffering but nothing like what this disease can do to a human body !!! When my sister in law called from the hallway i could hear my mom screaming so loud in agony and saying PLEASE PLEASE MAKE IT STOP !! But no amount of Morphine could even dim the pain.... She got to the point when her brain became affected that she didn't know anyone in the room. the Drs said that EVERY nerve in her body and every organ was emitting a tremendous amount of pain so much so that nothing could stop it... It lasted a couple days before she passed and my brothers and sisters could do nothing but hold her hands. The Drs at the university hospital said her case was so rare and rapid that only her and 2 others out of nearly 10 million people in the state were known to currently have it . Her body rejected ALL treatments. I came here looking to understand what happened and what this hideous monster of a disease is and does . we are all getting our children tested if its possible and making it WELL known on ALL their medical records that this monster is in our family bloodline and WHENEVER one of them sees a Dr with an illness and it appears to be one of the side effects of this disease that they are to look first for the disease then proceed if its not with normal treatment of the illness. Seeing you in the hospital bed hurts me sooo badly i cant stop crying. I see you but i hear my mom screaming in so much pain. I cant even imagine what your parents went thru seeing their baby girl laying there and they are helpless and cant stop this monster. I NEVER EVER want this disease to show its face again in my family line !! I cant imagine it being one of my children or relatives children laying there going thru what my mom did screaming daddy daddy make it stop !!! And all i can do is just hold their hand and let it take its course.... I couldn't live anymore after that..... I always say ill be 2 minutes right behind my daughter if she passed. Idk. Anyway thank you so much for your video it has really put a picture with my moms voice for me...im so happy you were able to fight it back...god bless yall ...thank you again..
You are such a beautiful lady! This made me cry but in such a positive way, my daughter was born with HLH in may 2017 she had to have a bone marrow transplant which took place dec 2017. And she is recovering very well. you are strong just like her! May god bless u with good health till the end of time x
I’m so happy you have recovered from it! My mom passed away from it two months ago and its still hard. I’m just watching videos trying to figure out what happened. I’m just happy you are strong and healthy again.
Wow, I am so sorry to hear about the passing of your mom. I will be sending tons of prayers you and your family's way. Thank you so much for such a kind comment. Please feel free to reach out to me if there's anyway I can be here for you. Jesus is holding you through this time, God bless you!
I know this is late, but I'm so beyond happy to hear and see that you battled such a hardship!! God truly has indestructible plans and will do anything to heal any trauma. Unfortunately, it has been almost 5 years since my good friend Dominic passed away from HLH. That helped me realize how serious and hard it is to beat, but God deserves infinite glory since he tells us that we can do hard things either way. Thank you for sharing your joy, strength and blessings!! ♥️🙏
Hi Jordan! Your faith in God has inspired me so much just from your comment. "God deserves infinite glory".. that really hit me and is going to stick with me thank you for sharing part of your story. I'm so sorry for you loss. Dominic will always be an HLH warrior, and I'm sending lot of love to you and his family. Keep that faith of yours bc girl you truly inspired me just by your comment!
God bless you, I do hope you're doing great. my daughter-in-law just got diagnosed with HLH 1/5/2024 we're going to fight prayers work God is in control, he's the great physician ❤ thank God for your recovery
Hi, Bev! Wow. I am so sorry you and your family are going through such a scary time. Please know that I am and will continue to pray for your daughter-in-law. God is absolutely fighting for her. God has been peace to me when I didn't know peace could be found, he has been a faithful friend even when nothing around me made sense, and he has been a healer physically, emotionally, mentally, and spiritually. He is Jehovah Rapha. I'm praying you all feel his peace and comfort in this season. God bless you all! ❤
I'm so happy you are well! My 7 year old son was diagnosed with HLH this summer. He has Sickle Cell and got a virus then developed HLH. He is now well. Thanks for posting your story. You are not alone.
Thank you so much for watching and for your comment. I'm so happy to hear that your son is doing well! God is so good and will use your son through his experience and journey! He is a warrior and a survivor forever!
Thank you for sharing your miraculous blessing. My nephew was just diagnosed with HLH. Your video gives me hope that GOD will heal and deliver him too. GOD bless you.
Hi Alexis, I’ve watched your video a few times now. First it was looking for answers as my dad was diagnosed April 2017. I live in Australia and HLH is very rarely diagnosed here. Unfortunately my father past away in September 2017 after fighting the good fight. As someone that doesn’t know you, but have seen how much energy and strength it takes to take HLH head on... I’m really proud of you. I hope you you are still carrying your fighting spirit 2 years on. Take care of yourself 💕
Hi Heather, wow... I am so sorry for your loss. Your dad was certainly a fighter! My dream is to work in the medical field and bring awareness to HLH, and even more so now I hope I can do that in remembrance of fighters like your dad. I pray that God brings you so much peace and joy everywhere you go! Thank you for such a sweet comment. Best of luck in all you do! ❤️
U r luckiest girl and u showed up your courage and didn't lost your hope.. I know the pain who suffers from this syndrome, coz my bestest buddy my dad who also suffered from this syndrome but unfortunately he died .. i miss my dad a lot ...
My dad is going through this, Hes about 8 weeks through Chemo and doing it rough as, not many peo-ple have gone through this, it was so sudden. Scary to say the least
my brother was diagnosed with HLH at age 20 and has passed a couple months ago after a 2 1/2 year battle, this video really meant a lot to me. God bless
I’m so sorry about your brother, Josh! Thank you for taking time to watch and comment. I’m sending lots of love and prayers to you and your family... your brother was a fighter! 💙🙏🏼
Thanks alexis for sharing this. My niece has just been diagnosed with HLH, caused bu mono virus. She will start her treatment tomorrow. This video is a great help for us. Thanks
Sending tons of prayers to you and your niece! Just know that God will bring you through this. Allow Him to give you strength and to heal your beautiful niece. It is a tough journey, but there is a clear light at the end of the tunnel, and I will be praying for you through the journey! Thank you so much for watching
Just an update, my niece is now clear of HLH, she is back to school, she had her 8th birthday today. Thanks Alexis, watching your video gave us hope and made the journey easier. God bless you. Lots of love and kisses
@@karimhabsi6508 hi, you may never be able to read this but I'm still trying my luck. My 7 yr old niece is also diagnosed with HLH. She got IV IG and is going out of the ICU since yesterday. How is your niece going after 6 yrs?
hey Girl! I'm soo happy that you've improved soo much. I came across your video, because I was notified an hour ago that my mom was diagnosed with HLH. She is 45 years old and was wondering how are you doing now? Do you still have it or is it completely gone away now? much love
Hi Crystal, I am praying that your mom is doing well. The doctors told me the longer I go without it coming back, the less chance I have of it coming back. I am doing well now. Please let me know if there is anything I can do to help you and your family. God bless you all!
just praying is all we can hope for. Her HLH is advancing, the doctors said they can't do anything for her anymore:( she had one doze of chemo and erupted a small intestine, and her wound is not healing fast enough. She's under a program called hospice now:(
Hi Alexis my 2 year old daughter was diagnosed HLH a month ago.she was in ICU for 2 weeks. I don't know what to do.i watched your video and give me hope that my baby can fight HLH.
We fought for a year and our daughter is a little better now. She is home and recovering from bmt transplant. Just hoping and praying she finally get lass this and start her life
I'm so happy u are abel to survive this my friend passed away at the age of 24 out of know where he passed away within 2 days his organs shut down. I hope they find a cure for this! He passed away september r 3rd they just got back to us today with cause of death the doctors did not know what was wrong with him they did all blood work it showed nothing.
vogler shah a year ago my best friend too 😭😭22 days fighting inna hospital i sae him die was terrible i still dont understand about this and why him just 30 years old my Sebastian 😭
I was diagnosed with HLH in june. i was the same way with losing my hair so my dad and i shaved our heads. it’s been so rough being home due to covid. i would love to talk to you and share stories.
You all are inspiring. My 17 year daughter is recovering from a BMT transplant. Her 1 year mark is in March and we will re evaluate her condition then.
hey! i posted i video today about my HLH story, and i didnt put many details, but a lot were like you. did you have extreme muscle pain too? if so wasnt it awful?! ugh hated it
Hello Alexis, my 3 mth daughter is diagnosed with Familial HLH, trying to do alot of research on way forward , would be really great if we can connect on way forward, as a parent we are too worried and clueless in the treatment, she is right now on 4 dose of Chemo etoposide
Thank you for sharing your story with us... I was diagnosed with primary HLH. I'm going on 7 years now. Your story gave me strength to keep fighting, thank you and god bless you.
You are a warrior, Catherine! Keep up the fight! God's got it. Thank you so much
Hi, Catherine. How are you? How's your HLH?
Strong & Beautiful inside & out! Your story & strength will empower more than you know. You're s blessing & inspiration.
That was such a beautiful story! I unfortunately had a friend pass away from HLH when he was almost 13 at the time just like me. I also have a friend who's brother survived it. Hlh is definitely fatal but God has amazing plans for you alexis! So happy for you beautiful!
i loved seeing you story. i was also diagnosed with HLH in 2015. it sure is something that just comes out of nowhere. its great to see how well you are doing
Hi Ana! Thank you so much, I hope that you are doing well! It really is such a crazy journey, you sure are a fighter, though! God bless!
The shackles on her wrist, the sticky pads on her head, brings back memories. I was too diagnosed with HLH. Was in ICU for 7 days and 14 more days in the hospital and was finally released. Having to learn how to walk again, or trying to write my name for the first time while my hand shaking. I just thank God after a month of being released there were no more traces of the HLH in my body. I pray that she lives long and lives for God. Amen
What procedure were done to you?
@@amarsahiya8335 none, I was able to recover miraculously.
DanInspiration did you receive any chemotherapy / etoposide? If yes, how long?
@@noorunalanoor3793 none i was completely healed it one day just disappeared. end of story.
Thank you for sharing your story. I was diagnosed with Familial HLH in 2012 at the age of 34. I am now 40yrs old and healthy with no signs of relapse. Dig deep and have faith. 100% recovery is possible
I'm so happy to hear that you are doing so well! Thank you so much for watching. God's got it!! God bless you!
Good to hear that diagnoses worked well for you. my wife was currently suspected to have Familal HLH and doctors have planned to cure it with steroids, etoposide and Bone Marrow transplant. Do you mind if i ask what kind of treatment was given to you. Thanks
Eswar Prasad ask doctors about emapalumab (is the only medication approved in Nov 2018 for Familial HLH) until transplant is performed
Hi Alexis! I am so glad to see that you are in remission and back at school. I am also a student at Kent state, and histiocytosis had been a large part of my life for the past 10 years. My 12 year old brother Eli has been battling with langerhans cell histiocytosis for most of his life. He is in his third remission as of 6 months ago. This disease has taken, but it has given even more. Strength, faith, and positivity has blessed our family and friends who have supported us through everything. And it seems as if it has done the same for you :) Thank you for sharing your story!
-Liyana
+Liyana Asmar Wow! I know how much battling histio was for several months, I can only imagine doing that for most of my life. Your family and your brother must be so incredibly strong! That is amazing that he is in remission, I pray that he continues to experience healing and health!! I would love to meet you sometime! Thank you so much
Had never heard of HLH until my 16 year old cousin was diagnosed. so glad that you are doing great. As I often share with family and friends, "TRUST GOD'S PLAN"
Im crying sooo hard watching your video sweetheart....2 days ago from this posting im making my mom who lives near you judging by the kent state banner .......passed away ...she was 60. She had type 1 HLH with ALF. Im 1,200 miles from home where she was. I wasnt there with her but my brothers and sisters were by her bedside for those last couple days. They told me on the phone as well as Drs said that it was the most violent and painful passing they have seen . im a military Veteran and I've seen pain and suffering but nothing like what this disease can do to a human body !!! When my sister in law called from the hallway i could hear my mom screaming so loud in agony and saying PLEASE PLEASE MAKE IT STOP !! But no amount of Morphine could even dim the pain.... She got to the point when her brain became affected that she didn't know anyone in the room. the Drs said that EVERY nerve in her body and every organ was emitting a tremendous amount of pain so much so that nothing could stop it... It lasted a couple days before she passed and my brothers and sisters could do nothing but hold her hands. The Drs at the university hospital said her case was so rare and rapid that only her and 2 others out of nearly 10 million people in the state were known to currently have it . Her body rejected ALL treatments. I came here looking to understand what happened and what this hideous monster of a disease is and does . we are all getting our children tested if its possible and making it WELL known on ALL their medical records that this monster is in our family bloodline and WHENEVER one of them sees a Dr with an illness and it appears to be one of the side effects of this disease that they are to look first for the disease then proceed if its not with normal treatment of the illness. Seeing you in the hospital bed hurts me sooo badly i cant stop crying. I see you but i hear my mom screaming in so much pain. I cant even imagine what your parents went thru seeing their baby girl laying there and they are helpless and cant stop this monster. I NEVER EVER want this disease to show its face again in my family line !! I cant imagine it being one of my children or relatives children laying there going thru what my mom did screaming daddy daddy make it stop !!! And all i can do is just hold their hand and let it take its course.... I couldn't live anymore after that..... I always say ill be 2 minutes right behind my daughter if she passed. Idk. Anyway thank you so much for your video it has really put a picture with my moms voice for me...im so happy you were able to fight it back...god bless yall ...thank you again..
You are such a beautiful lady! This made me cry but in such a positive way, my daughter was born with HLH in may 2017 she had to have a bone marrow transplant which took place dec 2017. And she is recovering very well. you are strong just like her! May god bless u with good health till the end of time x
Hi Salma! Wow, thank you so much. I am so happy to hear that your daughter is recovering well. May God bless you all! God's got it!!
I’m so happy you have recovered from it! My mom passed away from it two months ago and its still hard. I’m just watching videos trying to figure out what happened. I’m just happy you are strong and healthy again.
Wow, I am so sorry to hear about the passing of your mom. I will be sending tons of prayers you and your family's way. Thank you so much for such a kind comment. Please feel free to reach out to me if there's anyway I can be here for you. Jesus is holding you through this time, God bless you!
I know this is late, but I'm so beyond happy to hear and see that you battled such a hardship!! God truly has indestructible plans and will do anything to heal any trauma. Unfortunately, it has been almost 5 years since my good friend Dominic passed away from HLH. That helped me realize how serious and hard it is to beat, but God deserves infinite glory since he tells us that we can do hard things either way. Thank you for sharing your joy, strength and blessings!! ♥️🙏
Hi Jordan! Your faith in God has inspired me so much just from your comment. "God deserves infinite glory".. that really hit me and is going to stick with me thank you for sharing part of your story. I'm so sorry for you loss. Dominic will always be an HLH warrior, and I'm sending lot of love to you and his family. Keep that faith of yours bc girl you truly inspired me just by your comment!
God bless you, I do hope you're doing great. my daughter-in-law just got diagnosed with HLH 1/5/2024 we're going to fight prayers work God is in control, he's the great physician ❤ thank God for your recovery
Hi, Bev! Wow. I am so sorry you and your family are going through such a scary time. Please know that I am and will continue to pray for your daughter-in-law. God is absolutely fighting for her. God has been peace to me when I didn't know peace could be found, he has been a faithful friend even when nothing around me made sense, and he has been a healer physically, emotionally, mentally, and spiritually. He is Jehovah Rapha. I'm praying you all feel his peace and comfort in this season. God bless you all! ❤
I'm so happy you are well! My 7 year old son was diagnosed with HLH this summer. He has Sickle Cell and got a virus then developed HLH. He is now well. Thanks for posting your story. You are not alone.
Thank you so much for watching and for your comment. I'm so happy to hear that your son is doing well! God is so good and will use your son through his experience and journey! He is a warrior and a survivor forever!
Thank you for sharing your miraculous blessing. My nephew was just diagnosed with HLH. Your video gives me hope that GOD will heal and deliver him too. GOD bless you.
Thank you so much. Sending prayers your way! God is so much greater than any any disease. Stay faithful and stay positive.
Hi Alexis, I’ve watched your video a few times now. First it was looking for answers as my dad was diagnosed April 2017. I live in Australia and HLH is very rarely diagnosed here. Unfortunately my father past away in September 2017 after fighting the good fight. As someone that doesn’t know you, but have seen how much energy and strength it takes to take HLH head on... I’m really proud of you. I hope you you are still carrying your fighting spirit 2 years on.
Take care of yourself 💕
Hi Heather, wow... I am so sorry for your loss. Your dad was certainly a fighter! My dream is to work in the medical field and bring awareness to HLH, and even more so now I hope I can do that in remembrance of fighters like your dad. I pray that God brings you so much peace and joy everywhere you go! Thank you for such a sweet comment. Best of luck in all you do! ❤️
Hi Alexis, just checking in on you. I hope you are just living your most unimaginable life ♥️
U r luckiest girl and u showed up your courage and didn't lost your hope.. I know the pain who suffers from this syndrome, coz my bestest buddy my dad who also suffered from this syndrome but unfortunately he died .. i miss my dad a lot ...
God bless you!
I'm so glad you have fought hard and made a comeback! God is great all the time
Thank you so much for such a kind comment!
@@alexisbarbati1813 your welcome angel
@@alexisbarbati1813 your welcome sweetie
My dad is going through this, Hes about 8 weeks through Chemo and doing it rough as, not many peo-ple have gone through this, it was so sudden. Scary to say the least
I'm crying watching this.. u gave me motivation...! currently diagnose with HLH too..
How are you doing? I pray that you are doing well. Stay strong and stay hopeful. There is light at the end of the tunnel!
my brother was diagnosed with HLH at age 20 and has passed a couple months ago after a 2 1/2 year battle, this video really meant a lot to me. God bless
I’m so sorry about your brother, Josh! Thank you for taking time to watch and comment. I’m sending lots of love and prayers to you and your family... your brother was a fighter! 💙🙏🏼
Was it primary or secondary?
Thanks alexis for sharing this. My niece has just been diagnosed with HLH, caused bu mono virus. She will start her treatment tomorrow. This video is a great help for us.
Thanks
Sending tons of prayers to you and your niece! Just know that God will bring you through this. Allow Him to give you strength and to heal your beautiful niece. It is a tough journey, but there is a clear light at the end of the tunnel, and I will be praying for you through the journey! Thank you so much for watching
+Alexis Barbati thanks alexis, you are an angle, god bless you.
Just an update, my niece is now clear of HLH, she is back to school, she had her 8th birthday today. Thanks Alexis, watching your video gave us hope and made the journey easier. God bless you.
Lots of love and kisses
God is so good!!!!! Tons of love your way!
@@karimhabsi6508 hi, you may never be able to read this but I'm still trying my luck. My 7 yr old niece is also diagnosed with HLH. She got IV IG and is going out of the ICU since yesterday. How is your niece going after 6 yrs?
hey Girl! I'm soo happy that you've improved soo much. I came across your video, because I was notified an hour ago that my mom was diagnosed with HLH. She is 45 years old and was wondering how are you doing now? Do you still have it or is it completely gone away now?
much love
Hi Crystal, I am praying that your mom is doing well. The doctors told me the longer I go without it coming back, the less chance I have of it coming back. I am doing well now. Please let me know if there is anything I can do to help you and your family. God bless you all!
just praying is all we can hope for. Her HLH is advancing, the doctors said they can't do anything for her anymore:( she had one doze of chemo and erupted a small intestine, and her wound is not healing fast enough. She's under a program called hospice now:(
Hi Alexis my 2 year old daughter was diagnosed HLH a month ago.she was in ICU for 2 weeks. I don't know what to do.i watched your video and give me hope that my baby can fight HLH.
We fought for a year and our daughter is a little better now. She is home and recovering from bmt transplant. Just hoping and praying she finally get lass this and start her life
My dad( best buddy ) is no more coz he was also suffering from HLH Syndrome.....
I'm so happy u are abel to survive this my friend passed away at the age of 24 out of know where he passed away within 2 days his organs shut down. I hope they find a cure for this! He passed away september r 3rd they just got back to us today with cause of death the doctors did not know what was wrong with him they did all blood work it showed nothing.
I'm so sorry for your loss! We need as much awareness as possible for HLH! God bless you
vogler shah a year ago my best friend too 😭😭22 days fighting inna hospital i sae him die was terrible i still dont understand about this and why him just 30 years old my Sebastian 😭
I was diagnosed with HLH in june. i was the same way with losing my hair so my dad and i shaved our heads. it’s been so rough being home due to covid. i would love to talk to you and share stories.
Reagan I would love to talk with you!! Please feel free to email me at alexis.barbati@gmail.com and we can get in contact!! ❤️
You all are inspiring. My 17 year daughter is recovering from a BMT transplant. Her 1 year mark is in March and we will re evaluate her condition then.
hey! i posted i video today about my HLH story, and i didnt put many details, but a lot were like you. did you have extreme muscle pain too? if so wasnt it awful?! ugh hated it
Hey I just need more informations! Did You lost weight?
Im hlh free after 22 chemos❤️
GOD'S GOT IT!
Was it secondary or primary, if it was secondary, what is it ... How is your health now? .. Has the disease returned, God forbid
Hello Alexis, my 3 mth daughter is diagnosed with Familial HLH, trying to do alot of research on way forward , would be really great if we can connect on way forward, as a parent we are too worried and clueless in the treatment, she is right now on 4 dose of Chemo etoposide
Hi, my 7 yr old niece is diagnosed with HLH too.. how is your daughter?
@@amarsahiya8335 takin one day at a time , going through the process of chemo
Poor people from India have extremely less options and probsbly deaths. Hope you understand your blessings ...
I have the same
Hi. How are you doing? My daughter has HLH.
My brother had the same thing he got mono then hlh
my one year beby diagnosed primary hlh . I m in deep dictation can't undstand what to do ?
Hi Santosh, I know someone who received treatment for Primary HLH in Christian Medical College, Vellore, India. How is your baby doing now
How's your baby doing...