Join TSR now for chat about life, relationships, fashion and more…Sign up now

AMA- I have a genetic disease. Watch

    • Community Assistant
    • Thread Starter
    Online

    3
    ReputationRep:
    This genetic disease causes tumours on my whole body. I'm 16 and I'm tumour free but had surgery once to remove a benign tumour on my neck.

    This is very serious and I'd appreciate if there's no troll questions.

    Ask away!
    • Community Assistant
    • Welcome Squad
    Online

    3
    ReputationRep:
    What is the disease called?
    Offline

    2
    ReputationRep:
    wait, is that not cancer?

    either way hope you're alright.
    • Community Assistant
    • Thread Starter
    Online

    3
    ReputationRep:
    (Original post by Amefish)
    What is the disease called?
    NF2 (Neurofibromatosis type 2)


    (Original post by hamzakalinle)
    wait, is that not cancer?

    either way hope you're alright.
    The tumors are benign, so non-cancerous tumours :-)
    Offline

    2
    ReputationRep:
    What does "AMA" mean?
    • Community Assistant
    • Thread Starter
    Online

    3
    ReputationRep:
    (Original post by HabibSyed)
    What does "AMA" mean?
    Ask me anything.
    Offline

    3
    ReputationRep:
    Is it neurofibrosis ?
    I saw a programme about it on TV.
    Edit:Oh it is.
    What is the difference between type 1 and type 2 ?
    • Community Assistant
    • Thread Starter
    Online

    3
    ReputationRep:
    (Original post by bobby147)
    Is it neurofibrosis ?
    I saw a programme about it on TV.
    Edit:Oh it is.
    What is the difference between type 1 and type 2 ?
    Not too sure about type 1. Both cause tumours but type 1 makes you more at risk of certain types of malignant tumours.
    Offline

    3
    ReputationRep:
    (Original post by Quizlet)
    Not too sure about type 1. Both cause tumours but type 1 makes you more at risk of certain types of malignant tumours.
    What possible treatment options do you have,as there isn't a cure ?
    • Community Assistant
    • Thread Starter
    Online

    3
    ReputationRep:
    (Original post by bobby147)
    What possible treatment options do you have,as there isn't a cure ?
    Surgery!

    But last year the doctor said my genes are very special and 'different' to other people with NF2. He said there's a cure for the one I have and that I'm incredibly lucky. So I'm positive :-). He said that he expects the drug or whatever to be done in 10-15 years, when I'm about 30. But that's okay, stuff only starts to get worse at around 30, so..... I guess it's not all bad!
    Offline

    2
    ReputationRep:
    Do the tumours ever cause you pain? Have you just finished year 11? What are your plans for the future?
    Offline

    3
    ReputationRep:
    (Original post by Quizlet)
    Surgery!

    But last year the doctor said my genes are very special and 'different' to other people with NF2. He said there's a cure for the one I have and that I'm incredibly lucky. So I'm positive :-). He said that he expects the drug or whatever to be done in 10-15 years, when I'm about 30. But that's okay, stuff only starts to get worse at around 30, so..... I guess it's not all bad!
    Is the drug is clinical trials ?
    Has the doctor explained how the drug works ?
    • Community Assistant
    • Thread Starter
    Online

    3
    ReputationRep:
    (Original post by Pepzi_Kola)
    Do the tumours ever cause you pain? Have you just finished year 11? What are your plans for the future?
    I only have ever had one and it didn't cause much pain. It starts to get much worse at around 25.. but I have a long way 'til 25 years old. I just finished Year 11. I want to do medicine when I'm older .
    Offline

    2
    ReputationRep:
    More tumours create a larger cross sectional area, which causes drag! If you ever decide to identify as a horizontal landing-takeoff aircraft, you'd be super efficient with runway space, just that your non-aerodynamic properties make you a little worse at the flying part though. Good job, everybody has a purpose in life!
    • Community Assistant
    • Thread Starter
    Online

    3
    ReputationRep:
    (Original post by bobby147)
    Is the drug is clinical trials ?
    Has the doctor explained how the drug works ?
    The specialist wants me actually to go all the way to Manchester soon (very far so it must be important), not too sure why but it seems to be promising news. He'll probably explain everything there.
    Offline

    2
    ReputationRep:
    (Original post by Quizlet)
    I only have ever had one and it didn't cause much pain. It starts to get much worse at around 25.. but I have a long way 'til 25 years old. I just finished Year 11. I want to do medicine when I'm older .
    Okay, that's good that it wasn't that painful. I hope they find a cure before you're 25 then Good luck for your results and the future, I'm sure you'll do amazing
    • Community Assistant
    • Thread Starter
    Online

    3
    ReputationRep:
    (Original post by HabibSyed)
    More tumours create a larger cross sectional area, which causes drag! If you ever decide to identify as a horizontal landing-takeoff aircraft, you'd be super efficient with runway space, just that your non-aerodynamic properties make you a little worse at the flying part though. Good job, everybody has a purpose in life!
    This made me laugh so much and I don't know why this made me laugh.
    Offline

    3
    ReputationRep:
    Some would say people are born to do certain things-that the yearning in the human condition activates a Divine Law, calling forth the answer to their prayers, through people, places, circumstances and events bringing into fruition-that which is pleasing to The Most High. Others would say science and scientific advancement is unrelated to religion, and while I disagree, I can respect their views.

    But as for me, as a spiritual and religious person who believes in the power of prayer(and then of course, getting up to do the best we can after that), I would like to offer this little prayer:

    May Allah bless you with no further tumors, and prevent the rise of any other harmful aspects in your body. I pray He will give you the strength, health, and vitality to be kept in good health, until the cure you mentioned is available to you. And, for those who have a the second form you indicated exists, I pray for their blessings, as well, and truly hope medical science can find a way to aid them, too.

    (Original post by Quizlet)
    This genetic disease causes tumours on my whole body. I'm 16 and I'm tumour free but had surgery once to remove a benign tumour on my neck.

    This is very serious and I'd appreciate if there's no troll questions.

    Ask away!
    • Community Assistant
    • Thread Starter
    Online

    3
    ReputationRep:
    (Original post by luq_ali)
    Some would say people are born to do certain things-that the yearning in the human condition activates a Divine Law, calling forth the answer to their prayers, through people, places, circumstances and events bringing into fruition-that which is pleasing to The Most High. Others would say science and scientific advancement is unrelated to religion, and while I disagree, I can respect their views.

    But as for me, as a spiritual and religious person who believes in the power of prayer(and then of course, getting up to do the best we can after that), I would like to offer this little prayer:

    May Allah bless you with no further tumors, and prevent the rise of any other harmful aspects in your body. I pray He will give you the strength, health, and vitality to be kept in good health, until the cure you mentioned is available to you. And, for those who have a the second form you indicated exists, I pray for their blessings, as well, and truly hope medical science can find a way to aid them, too.
    Aww thanks :hugs:
    Offline

    3
    ReputationRep:
    You are most welcome!

    (Original post by Quizlet)
    Aww thanks :hugs:
 
 
 
Write a reply… Reply
Submit reply
Updated: August 16, 2017
TSR Support Team

We have a brilliant team of more than 60 Support Team members looking after discussions on The Student Room, helping to make it a fun, safe and useful place to hang out.

Poll
How are you feeling about GCSE Results Day?

The Student Room, Get Revising and Marked by Teachers are trading names of The Student Room Group Ltd.

Register Number: 04666380 (England and Wales), VAT No. 806 8067 22 Registered Office: International House, Queens Road, Brighton, BN1 3XE

Quick reply
Reputation gems: You get these gems as you gain rep from other members for making good contributions and giving helpful advice.