Neurofibromatosis Leaves Mum’s Body Covered In Lumps

Neurofibromatosis Leaves Mum’s Body Covered In Lumps

RACHAEL REYNOLDS: Neurofibromatosis makes me feel very insecure. Other than that I think
it has made me a better person to understand other people’s difficulty. COMM: Busy mother of 4, Rachel Reynolds is getting her kids ready for school. But she
has a condition that makes going outside every day an ordeal. RACHAEL REYNOLDS: I have a skin condition called Neurofibromatosis Type 1. And it’s
genetic, being passed down from my dad. You can be born perfect and as you get older,
lumps pop out on your skin. Some people have it more severe, some people have it less severe.
I have lumps all over my body, they started appearing on my face, my neck, my arms, my
tummy and all over my back. RACHAEL REYNOLDS: I really can’t remember how old I was when I was first diagnosed.
I think I was about 14, 15 when I was aware of a lump coming through. COMM: Now aged 41, Rachael acknowledges that the condition has taken its toll on her ability
to socialise. COMM: Sometimes I can’t talk to people and I feel that people don’t want to talk to
me. I am very paranoid. In the past I didn’t have much confidence with meeting people in
my love life. I have never met the right person until I met Michael. And Michael has been
an amazing support because he sees past that, he sees me as a person. He makes me feel worthy.
He always makes me feel great and I have never felt the need to hide from Michael. MICHAEL REYNOLDS: Yeah. I noticed it when I first met her. I am just one of these people,
you are who you are. Actually I hardly see it. It’s weird. RACHAEL REYNOLDS: I get quite of lot comments when I am out. I either want to hurl abuse
back, which isn’t really the best response. Or I go withdrawn and quiet, deal a bit with
it when I get home. But it completely shuts me down. It can shut me down for weeks. It’s
not only me having to deal with it. My children have to deal with public comment, people staring
at their mum. They either want to fight back or they want to protect me. But it’s really
hurtful for the whole family. SIOBHAN: I look at them in a certain way. Because it is not very nice, every mum is
equal, no matter what the looks are. JAMES: Don’t really want people to take a look at my mom, and then, you know, and
then the type of comments. That will get me angry and I get so angry that I want to probably
hit them, and I don’t want to do that. COMM: However, Rachael has refused to let her condition isolate her. RACHAEL REYNOLDS: I have met a few people with my skin condition. I have set up a Facebook
group called Neurofibromatosis Our World. Currently have about 330 some members at the
moment. I am hoping to meet quite a lot of people through that page. I am wanting to
help other people. I am wanting to help my family. I am wanting to help my children through
it . Help my children deal with it by meeting other people with it. And I have made quite
a lot of friends through this group. COMM: Despite the advances she has made, Rachael is concerned that her condition is getting worse. MICHAEL REYNOLDS: She is worried all the time. Her condition has got worse since I met her.
She worries what I think about her a lot. If we are going out for an engagement, she
is really worried what she is wearing, how she feels, what she looks like, what people
might think of her. To hell with them like, it’s you are who you are. Go express yourself
and people will be in your life if they want to be. And then when they don’t, they need to go. COMM: Rachael has had laser treatment in the past. And today she and Michael are going
to see if there are any more treatment options available. RACHAEL REYNOLDS: I feel like the laser has helped me massively. I had quite a lot off
the top of my back, and I have had some off my chest and I have had few off my face. But
it’s been four years since I have had it done. I would definitely want to have more
laser treatment on my face before they get worse. I can cope with everywhere else, but
with my face I can’t. Because obviously that’s the first thing people see is your face. RUTH DRIMER: Neurofibromatosis Type 1 is a genetic condition that affects chromosome
17. It affects about one in two and half to three thousand people, which makes it one
of the more common genetic conditions. No, it is not curable. Any cure would mean looking
at some kind of gene therapy. That kind of thing. There are lots of treatments in the
pipeline that they are looking at trial stages at the moment, but they are usually for specific
things within the condition, like large plexiform tumours. But no, at the moment, there is no
cure for this condition. COMM: Because Neurofibromatosis is a genetic condition, Rachael and Michael are concerned
that it could have been passed on to one of their children. Rachael inherited it from
her father, who died 5 years ago. RACHAEL REYNOLDS: My dad was a very private man. My dad never spoke about his Neurofibromatosis.
I think my dad felt very guilty about passing it on to me. Yeah. I think looking at me hurt
him. If one day we find out any of the children got it, we will just take it one…one day
at a time, deal with each situation as it arises, and be there to support them. MICHAEL REYNOLDS: Being through it yourself, with the lack of knowledge when you were younger,
and obviously it is 2017, so more and more specialists out there. And she’s been through
the stepping stones for the appointments. You can fast track it. And you know what’s
right for the kids because you know the stages what they are going to, if they’d happen
to have it, she’d know. But touch wood, they have been all good.

84 comments / Add your comment below

  1. If there's is God then why God did this to her. I want our Grade all mighty God cure her. Keep your faith in him. Amen

  2. Eu sou de canpina verde nima Gerais Brasil eu será que minguei vai né ouvir sou portadora da neuriflibronatose invonquenraus tenho no corpo intero

  3. So her father was stupid enough to pass on his rancid genes and bring someone else into the world to suffer the misery, and then she does exactly the same thing. Why are people so stupid?

  4. I have it also just like her. All on my face chest and back. They bleed easly and hurt like hell some times. It makes me feel different around people and sometimes i don't like being around my own family.

  5. Obvs there are lots of positive things to say about this woman, however I just don't think she should've had kids knowing that it is a hereditary condition. Knowing how much she suffers herself why risk putting another human through that? I know none of the kids are showing signs of it now,but apparently it can begin to develop later in life too, so the kids aren't out of the woods yet…if I was her child I'd be living in fear every day that I would start showing signs of it…every pimple i got would send me into sheer panic. It's just not fair that shes putting her kids through this…


  7. I have the same condition and I'm lucky in the lumps and bumps however I suffer from serve metal health anxiety depression ASD social problems learning problems I also suffer from the bone problems with ribs sticking out of my chest with scolosis it's a horrible vairby condition

  8. Please embrace yourself. We are all different. Everyone is beautiful. No one should have to try to fit in society to please others. It's thier problem if they can't accept difference.

  9. I found this more interesting that although the video and commenting was all about the NF type 1, what wasn't pointed out was the obvious fact that Deafness is hereditary in this family too.

  10. My mum has this condition, one day, kids (9 years old I think) said:That woman so ugly! Weirdo!
    I really angry to him

  11. sadly we are vain people and this lady has been battling this she is strong and beautiful inside and out stay strong lady stay strong

  12. It's sad when you're born with something you have no control over and she's a beautiful woman but, I would not have kids. Knowing that it is genetically passed, I would not chance passing this to kids. She may be able to cope with having NF but no one can predict how other people will handle it. I'd adopt, risk free and still be able to give love and raise a child with one less issue to cope with.

  13. I have this condition and it’s getting worse. I’m only in my mid 20s so I know that by the time I’m my parents age, I’ll probably be covered in them. They can be painful and can bleed over all your clothes. You feel eyes on you all the time in public and then get kid’s making comments. The kid’s I don’t mind as much as if they’re young, they’re just curious about the world around them. The teens/adults that make comments, tho is a whole different thing.

    Literally had a person go up to me and say ‘are you contagious????’ And I’m like…’no but your attitude is, assh*le*’ Like how do you just say that to a stranger? They’re are much nicer ways to ask that that I would gladly answer. That not so much.

  14. my mother had Neurofibromatosis type 1 and the only treatment my mum was ever offered was removal of the more troublesome ones other than that nothing… people were so horrible to her, saying nasty things, and calling her nasty, horrible names and saying it was catching, including employers and other people in authority etc and growing up was so hard as people would say nasty horrible things to me regarding my mother's condition.

  15. My mums good friend had this. She lived a life with humour to combat how she truely felt. I will always remember her as Aunt Linda. I thought she was amazing. As I got older I realized how hard it was for her. I will always remember her as the most influential person in my life and to be honest I always, maybe because i grew up with her, never saw it as bad. I look at this woman and see a person. When you talk to someone you look them in the eyes and hers are stunning

  16. I also have NF1. It's really sad and hard for me. People look at me, make fun of me. Some of the family reject me. It's hard being rejected. I don't have friends. So I understand the people with NF.

  17. Your story is so inspirational! You are awesome! Many wonderful blessings to you! Let your life be filled with miracles! Live happy! Live long!

  18. Have you tried methotrexate, carboplatin, vinblastine, or doxorubicin? Those might help… but the side effects are really bad.

    click this link to see a FAR worse case

  20. despite the lumps/bumps she,s "Quite" Attractive………………………she,s certainly "not" ugly. HARD thing to live with though etc.

  21. Lol… my parents are the only ones that have ever been mean to me about it. When I was diagnosed, I was 37. before that, my father told me it was time to get my skin 'hoovered'. they refused to acknowledge that it was genetic, and that they had passed it on to me.

  22. She shouldn't be sad if I eat cat fish honey my face will look scary honey don't be sad for skin I'll eat catfish just got her if she wants me to (lies im lieing I have school and I wanna look cute for 6th grade but she too PERIOD

  23. I'm 11 and I have NF type 1, I have tumors in my eyes but they still work, but they are bad but I dont have glasses, I dont have any tumors on the outside of my body only on the inside, I have scoliosis, NF causes scoliosis, when I walk my shins turn in so I get made fun of for walking weird, my shins cant be fixed, Nf is hard to live with, I also feel alone because I've never met anyone fave to face with the condition, also I'm the only person in my entire family (no family histort) that has NF

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