i am also hemophilia b patient both legs and arms affected by joint bleeding I am alive just because hope one day i will free from pain. writing this comment with tears in my eyes.😢
we as Hemophilia of thirs world countries we still getting plasma in hospitals and not everybody can get fator 8 . gen therapy is a dream of every hemophiliacs
It is so upsetting to hear this. Access to factor replacement should be the right to every patient. Which country are you in? There may be opportunities through the WFH humanitarian aid programme
Severe Haemophilia B here. Taking part in a similar gene therapy trial I started in April 2022. Factor IX level is around 50 just now. I can so relate to your journey! The period on steroids was a particularly low part of my life, coupled with some other life events. I'm glad we have someone like you speaking for us and raising awareness.
Hey Richard. Thanks for sharing your experience. The steroids can be brutal and then it compounds on anything else you might be dealing with too. I'm glad to be past that chapter, as I always say it was the most unwell I had felt. Very happy to hear about your promising FIX levels! I'm sitting roughly around 20-25% at present... so still technically a mild but it has still been totally life-changing. I sure don't miss injecting myself with factor multiple times a week!
Hello, my step son has severe hemophilia. He is 18 and will be moving in with us soon. I’d love to meet ppl to understand how to help and guide him as a young man
Hi Elizabeth. Which country are you in? I can point you in the direction of your best patient group where there may be events and opportunities to meet others with haemophilia
@@LukePembrokeVideo Hi Luke my brother is hemophilic and we are living in India. I just wanted to know in which country the gene therapy is available. Actually in India the gene therapy is not available. Plz help us on this.
Hi Luke 😃 I'm feeling glad to find u here. I need to connect with u cause my younger brother also hemophilia patient. I want to study more about it so that I can help my brother and other people also from Asian countries.
Gene therapy has the potential to prevent internal bleeding but it won't necessarily alleviate joint pain that is caused by chronic problems such as arthropathy. My ankles still cause me pain occasionally due to the joint damage caused by internal bleeds I had when I was younger
Great video! My son is 8 and has severe haemophilia type A, he is amazing and I hope gene therapy becomes readily available, he has just been diagnosed with Haemophilic arthritis in his left ankle.
Thanks Toni! I hope gene therapy is a reality and an option for everyone in the future. There's currently some excellent treatments available now for haemophilia A. Sadly the ankles are the tricky problem joint we still often see in lads with haemophilia. Hopefully he is getting prophylaxis of some sort and you can prevent as many bleeds as possible in the future
@@LukePembrokeVideo thank you for replying, he has changed his treatment to Hemlibra which is amazing as he has stopped having bleeds now, but sadly some damage has already been done from having lots of bleeding and the treatment before wasn't as preventative as we thought.
Plz give one more answer we are many people how are suffering from genetic disease like pkd are there therepy on this is your country plz difinitely answer 🙏
hello my name is sukron. i am from indonesia, i have hemophilia A disease, i have been suffering from this disease for 22 years, and i want to get well like my friends.
Hi Luke Are you a hemophilia A or B because our new born was diagnosed with S-Hemophilia-A and we just praying and hopping that something such as gen therapy is on its way for him?
Hi there. I am (was) severe haemophilia B. Gene therapy trials are also happening in haemophilia A too. The technology has come a long way, but it is still a long way off being trialled in children, mainly due to their livers still growing. The good news is there are many other effective treatments that already exist for treating haemophilia A, such as extended half-life factor VIII and non-factor treatments such as Hemlibra. A diagnosis is always very scary, but you will learn to overcome haemophilia. I highly recommend reaching out to your local and national patient organisations, depending on where you are in the world. Being part of the community and meeting others has been the most helpful thing for me growing up with haemophilia
Dude i am from india i am heamophilia A factor 8 deficiency.. Is this possible for gene therapy lifetime cure treatment work on now. Why i am ask this question because i read so many articles and magazines internet videos i find gene therapy i avail or ready to working heamophilic patient.. Beacause you know we are all suffer in this genetic disorder life long we couldn't reach our goals or whatever so things its hard to me.. One way we waiting and hope for this gene therapy.. Bur it does not avail anywhere.. Gene therapy treatment always going in 3 stage level research it not avail in market.. My hematology doctors and other medical researcherd writing magazines this answers only.. I hope your videos make me very happy to see you.. Please tell brother its true gene therapy treatment its avail heamophilia patient need fulfillment enjoy life... Tell me brother..
Gene therapy is not an approved medicine yet. It is still in clinical trials for both haemophilia A and B and has only been tested in a limited number of people. Whilst it is a promising new treatment, there is still a lot to learn about its long term safety and effectiveness. If you are curious about trials you can check clinicaltrials.gov
Hey please help me in this regard..my two cousins are suffering from hemophilia and they wanted a guide to treat this disorder..can u contact us or provide your contact or whatsaap number so we can reach u for proper guide.. please respond me asap
i am also hemophilia b patient both legs and arms affected by joint bleeding I am alive just because hope one day i will free from pain. writing this comment with tears in my eyes.😢
😥
I am also himophilia a
Bro I am hemophilia B my left leg knee and ankle damaged and elbow
stay strong brother! Have you contacted the patient organisation in your country?
Stay strong ❤ you’re one of the bravest people alive just know that. Haemophilia is not easy to live with.
we as Hemophilia of thirs world countries we still getting plasma in hospitals and not everybody can get fator 8 . gen therapy is a dream of every hemophiliacs
It is so upsetting to hear this. Access to factor replacement should be the right to every patient. Which country are you in? There may be opportunities through the WFH humanitarian aid programme
Severe Haemophilia B here. Taking part in a similar gene therapy trial I started in April 2022. Factor IX level is around 50 just now. I can so relate to your journey! The period on steroids was a particularly low part of my life, coupled with some other life events. I'm glad we have someone like you speaking for us and raising awareness.
Hey Richard. Thanks for sharing your experience. The steroids can be brutal and then it compounds on anything else you might be dealing with too. I'm glad to be past that chapter, as I always say it was the most unwell I had felt. Very happy to hear about your promising FIX levels! I'm sitting roughly around 20-25% at present... so still technically a mild but it has still been totally life-changing. I sure don't miss injecting myself with factor multiple times a week!
Thanks for this video! Severe A Hemophiliac here! Super excited for our community's medical advancements. Keep up the content when you can!
Hello, my step son has severe hemophilia. He is 18 and will be moving in with us soon. I’d love to meet ppl to understand how to help and guide him as a young man
Hi Elizabeth. Which country are you in? I can point you in the direction of your best patient group where there may be events and opportunities to meet others with haemophilia
this is really great dude, good luck for festival entry! :) xx
Thanks my dude ❤️
@@LukePembrokeVideo Hi Luke my brother is hemophilic and we are living in India. I just wanted to know in which country the gene therapy is available. Actually in India the gene therapy is not available. Plz help us on this.
What a great video Mate. So so good.
Thank you
Thanks dude! Appreciate it
How much does it cost?
I am in the hemophilia A gene therapy study. I was dosed in 2018.
I just saw your comment on my latest video Alex. Thanks for sharing your experience. I replied there :)
What a great video I'm happy for your new life jurney ❤️
Thank you
I'm also in this blood disease i wish to it cure me one day
Could you help me..
@@rudrakumarrashmiranjanrana2042 god plzz give us also gene therapy
Pls help my son who is hemophilia a. We live here in the philipines
Hi! I have a severe hemophilia A and i would love to see a video update about your current condition with gene therapy. Be safe bro.
Check out the latest video on my channel which was first shown at WFH2022
My 5 year old son is also suffering from diseases, he is himophillia a patient
Hi Luke 😃
I'm feeling glad to find u here.
I need to connect with u cause my younger brother also hemophilia patient. I want to study more about it so that I can help my brother and other people also from Asian countries.
great video I have swellings in my ankles if I take gene therapy my ankles will heal ?
Gene therapy has the potential to prevent internal bleeding but it won't necessarily alleviate joint pain that is caused by chronic problems such as arthropathy. My ankles still cause me pain occasionally due to the joint damage caused by internal bleeds I had when I was younger
Great video! My son is 8 and has severe haemophilia type A, he is amazing and I hope gene therapy becomes readily available, he has just been diagnosed with Haemophilic arthritis in his left ankle.
Thanks Toni! I hope gene therapy is a reality and an option for everyone in the future. There's currently some excellent treatments available now for haemophilia A. Sadly the ankles are the tricky problem joint we still often see in lads with haemophilia. Hopefully he is getting prophylaxis of some sort and you can prevent as many bleeds as possible in the future
@@LukePembrokeVideo thank you for replying, he has changed his treatment to Hemlibra which is amazing as he has stopped having bleeds now, but sadly some damage has already been done from having lots of bleeding and the treatment before wasn't as preventative as we thought.
I have hemophilia type b
Im from algeria how i can get gene therapy im suffering with the factor 9 injections
Plz give one more answer we are many people how are suffering from genetic disease like pkd are there therepy on this is your country plz difinitely answer 🙏
Which company product is this one
Jeen therapy when come to India?
I don't know unfortunately. As far as I am aware, clinical trials are taking place in a limited number of countries
So what happened nxt??
Check out my latest video for an update :)
Good luck 👍🏽😸
Hopefully it goes well 😃
Help me bro we are two brothers and we have hemophilia A and we don't have a good treatment here in Pakistan thank you and do something for us
hello my name is sukron. i am from indonesia, i have hemophilia A disease, i have been suffering from this disease for 22 years, and i want to get well like my friends.
Where did you go for this therapy? I’m very interested as well!
clinicaltrials.gov
@@LukePembrokeVideo how I can under go this therapy
let's gooo
Hi Luke
Are you a hemophilia A or B because our new born was diagnosed with S-Hemophilia-A and we just praying and hopping that something such as gen therapy is on its way for him?
Hi there. I am (was) severe haemophilia B. Gene therapy trials are also happening in haemophilia A too. The technology has come a long way, but it is still a long way off being trialled in children, mainly due to their livers still growing. The good news is there are many other effective treatments that already exist for treating haemophilia A, such as extended half-life factor VIII and non-factor treatments such as Hemlibra. A diagnosis is always very scary, but you will learn to overcome haemophilia. I highly recommend reaching out to your local and national patient organisations, depending on where you are in the world. Being part of the community and meeting others has been the most helpful thing for me growing up with haemophilia
Dude i am from india i am heamophilia A factor 8 deficiency.. Is this possible for gene therapy lifetime cure treatment work on now.
Why i am ask this question because i read so many articles and magazines internet videos i find gene therapy i avail or ready to working heamophilic patient..
Beacause you know we are all suffer in this genetic disorder life long we couldn't reach our goals or whatever so things its hard to me..
One way we waiting and hope for this gene therapy.. Bur it does not avail anywhere.. Gene therapy treatment always going in 3 stage level research it not avail in market.. My hematology doctors and other medical researcherd writing magazines this answers only.. I hope your videos make me very happy to see you..
Please tell brother its true gene therapy treatment its avail heamophilia patient need fulfillment enjoy life... Tell me brother..
Gene therapy is not an approved medicine yet. It is still in clinical trials for both haemophilia A and B and has only been tested in a limited number of people. Whilst it is a promising new treatment, there is still a lot to learn about its long term safety and effectiveness. If you are curious about trials you can check clinicaltrials.gov
@@LukePembrokeVideo brother what is this treatment.. This treatment (name) its working on heamophilia a patient.
@@sarleen9916 treatment name gene therapy its promising and curious treat need reduce cost
Are you completely cured of this disease by gene therepy 🤔
I currently have mild haemophilia factor levels
Will you be completely fine what the doctor gave a clear answer 🤔
Hey please help me in this regard..my two cousins are suffering from hemophilia and they wanted a guide to treat this disorder..can u contact us or provide your contact or whatsaap number so we can reach u for proper guide.. please respond me asap
My son is 2yr old factor 8 will u say where to do this treatment send address 🙇♀️
gene therapy is not available for children
@@LukePembrokeVideo I am 17 years old so please help
@@Nilesh_menaria_r gene therapy trials are only currently available for 18+ years old
@@LukePembrokeVideo next year I am 18+ so kha se take gine theraphy india available ya not please answer me i am not fast in English 😅
@@LukePembrokeVideo price of gene therapy?
i subbed ;)
@Drippy Yoda yes my guy
@Drippy Yoda don't forget to take your calpol
Beans
Thank you Dear brother 🌺
Best oF luck 🤲🌺💖🤲
I am a hemophilia (A) present,
Plz Help me Sir_😥🙂
And all update
hello
Congrats to factor 9 one person now let's work for8
🤞
OH"God where are you ? Please,help them who have a hemopheliya every person are crying .( if you are here on world).amen
😉😘
I belong india Heamopilia A
bacon
eggs
peez