My beautiful daughter and my auto immune legacy - NRAS

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My beautiful daughter and my auto immune legacy

Bon1
Bon1
10 Replies

Dear kind and wise people. I am posting this in a spirit of absolute honesty so please excuse any ranting or stuff that doesn’t make sense. My exquisite daughter of 11 has been diagnosed with vitiligo and I am heart broken. At the moment it is not very noticeable but it is spreading and I am so so scared for her happiness. I feel as though I am not coping at all. I dread to think what other surprises her immune system may have in store for her and am despairing that she may lose her confidence or think herself ugly.

I am hiding these thougjtsnfromher of course but don’t know if I’ve ever felt so low. Even when I was down after getting very ill two years again it was always out of fear that I would not be able to help my children.

The future looks unbearable today and has done since the doc confirmed my fears.

10 Replies
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Nessa28

Please remember your beautiful daughter will always be beautiful . It is always a difficult road for both child and parents to walk especially if you are not well yourself . She is 11 and resilient and loved . Be open with her cry with her laugh with her . Life throws us so much at times and sometimes it is cruel and unfair but you're a mum and you love unconditionally so be her rock walk her journey with her and remember your never alone there is always someone to hold your hand be it your family friends or this site . I wish you both much love and happiness and of course health 🤗💐

7 likes
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Nessa28
Nessa28
in reply to Nessa28

Sorry I also meant to say I have As and RA and my 18 year daughter is showing symptoms the doctor will refer her to rheumatology as they will monitor it as this can be hereditary so I do understand how scary this can be xx

4 likes
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Bon1
Bon1
in reply to Nessa28

Thank you. What you say is true - it’s finding the strength to do it that I am struggling with. I appreciate your kind words very much.

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Damaged
Damaged
in reply to Nessa28

I hope all goes well for your daughter. As a mother I can appreciate the hell it must be for you to see your children suffer. I sincerely hope all is well for all of you.

1 like
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Amy_Lee

Dear Bon1 and Nessa,

I am so sorry to know both your situation. As Nessa said I do think it is good to let her know the truth and walk along with her so that she knows there is great support from mom. It is certainly very hard for a very sick mom to take care of the daughter who is as sick too.

Do not worry about being silly here, just share your feeling if you need to, many good people here are very much happy to listen to your sadness or happiness. I hope both Bon and Nessa can have your condition under control so that you can help your kids along.

Amy

6 likes
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Candy

Hi, I do feel for you, as you feel for your children and would rather experience things yourself than your children. There is a beautiful model called Winnie Harlow, who also has vitiligo and she seems feisty and I feel is a good role model for the condition. I’m sorry I don’t have any wise words or advice to add, but as a Mum I know how it feels, although for a different problem. I wish you all the best for you and your beautiful daughter. Candy

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Witness2

It's bad enough knowing what chronic disease can do without believing we've passed on faulty genes to our children. I am so sorry you have this worry. My eldest son has joint pain at the moment (awaiting a blood test) and my daughter is expecting her first baby and that was what triggered my RA so I'm concerned about her too...and although worrying won't help, I can't help myself.

There is excellent make up for Vitiligo nowadays (NRAS published an article on it a couple of years ago in the newsletter) so if your daughter grows up feeling self conscious she could use that perhaps, I just hope she'll have such great self esteem she won't feel the need. Take heart and share your fears any time. We take it in turns 😘

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BlightyFiveStar

Hi Bon1 and hugs from one mum to another. One of my children has a condition we cannot help (not vitiligo) and I have similar emotions to you - Worry for how it may affect them in the future and frustration at not being able to stop it, being a couple.

I don’t know if you live in the UK but the BBC did a programme recently about young people living with vitiligo, I will look it up for you and post name.

I know it’s hard, but I do think that in society now there is in some ways more space for differences and diversity than there has ever been, although as a parent feeling very protective of a child and wondering how their condition may affect them socially it doesn’t always feel like that. I think building up their confidence in who they are and having value far beyond how they look is key.

2 likes
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Bon1

Thanks everyone. I feel less alone now. The irony is right now my girl doesn’t care much - I am the one losing it! Thanks for taking the time to reply.

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premierscfc

I've had Vitiligo most of my life and after seeing the BBC show called Misfits like us made me realise that being Caucasian with Vitiligo is much easier.

I also wasn't aware till recently that you need to protect the white patches need even more for from the sun as the missing skin pigment melanin is part of the bodies protection for your skin.

I also realise that being a male makes it easier to cope with this visible changeable condition.

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