Daughter diagnosed =(: Just a short rant if I may. I... - NRAS

NRAS

36,539 members45,165 posts

Daughter diagnosed =(

shareasmile profile image
16 Replies

Just a short rant if I may. I was diagnosed with RA 2 years ago. I've been through the pain, hair loss, swelling, fatigue, and frustration that many on this site have experienced. Last week my 28 yr old daughter was also diagnosed with RA. It breaks my heart to know the pain and struggles that she will have to endure at such a young age. Glad we have each other.

Thanks for allowing me to unload a bit.

Written by
shareasmile profile image
shareasmile
To view profiles and participate in discussions please or .
16 Replies
kirsty1987 profile image
kirsty1987

I've had it since I was 10, I am now 28. I hope it gets managed quickly. I'm only now getting mine under control as I don't think I really understood it. You will have each other to compare notes as such and she will have you to understand how she is feeling. Just having someone who understands makes a big difference. Kirsty

carol555 profile image
carol555

My heart goes out to you and your daughter, I was diagnosed about the same time as you and have a daughter who is 27 and this is my fear for her so I can imagine how you are feeling. I hope you both get the best support and wish you well on your Journies and that you get the best treatments xxx

Beaches2 profile image
Beaches2

Oh no! I'm so so sorry. I too have a daughter the same age and so that very thought crosses my mind too. We can only hope that she has a mild version and it is quickly brought under control and put back in its box.

I know there is loads of research going on in the world of ra.....there will I'm sure be better more targeted treatments and perhaps even a cure coming along before too long.....probably no benefit to us, but for our younger ones?

I'm sure you will be lots of support and comfort to each other through this. As Kirsty says you will at least be able to help her understand the importance of getting it under control quickly and how to navigate the system!

You rant away....this is a rotten horrible condition and should just go away and leave us all in peace.

Downtime profile image
Downtime

I am in my sixties and the daughter of a R A mother. She was diagnosed young and was completely disabled by the time she was my age. I thought I'd escaped but I have recently been diagnosed after 2 years of joint pain, swelling etc. Mine is seronegative. I understand that there is a 1 in 5 chance of developing it when it's in the family. So its not necessarily a given that a daughter will get it at all and now the treatment is so much more aggressive and effective it should be brought under control fairly quickly.

As you say there are new treatments coming along and there might even be a cure on the horizon so it's not all doom and gloom. I know how you must feel as its such swine of an illness but you will be able to help her and know how she feels, which is good as we look ok but definitely don't always feel ok!

Birthdaygirl profile image
Birthdaygirl

Really sorry to hear your news about your daughter but glad you told us. It does help to rant. You are entitled. We are all entitled. This disease is cruel. Hope your daughter gets the best of treatments very soon. Let us know how she gets on please. Take care.

DC56 profile image
DC56

I know how you feel I was diagnosed when I was 29 my daughter was diagnosed when she was 35 It dose make you wander what we did wrong in another life , wishing you both the best x Dawn

farm123 profile image
farm123

I do wonder how wise I was to have 4 children after being diagnosed at 19 but for the first 2 I only had one joint involved and it was manageable. When I went on the have the other 2 I had been fairly controlled on gold injections and you forget how things are on nothing. Now at 48 and after a TKR and various treatments that failed and still not quite under control and many joints involved I am extremely concerned that they may suffer. Farm

Clare-NRAS profile image
Clare-NRASPartnerNRAS

On a positive note the treatments are improving all the time and with your daughter being diagnosed quickly she hopefully will be commenced on therapy sooner and get the disease under control rapidly. Be sure to contact NRAS if you feel that either yourself or your daughter are not getting optimum care. Familarise yourselves with the NICE guidelines on the treatment of RA and don't settle for less. I know it's easier said than done but don't accept delays or sub-standard care as your health is of the highest importance. nras.org.uk or 0845 458 3969 or enquiries@nras.org.uk for any further help or support.

shazbat profile image
shazbat

I agree with everyone. I got RD at 28 then went into remission until I was 36 then got full blown. Now I'm 57 and gone through most of the treatments available. But what I have noticed is the speed at which the best treatment is now reached. When I was first treated I was on certain treatments for years, because they didn't have the substantial treatments they have now. Plus it is now treated a lot more seriously, not just " an old persons disease ". And we have great campaigners and sources of information in the NRAS. So don't despair you and I were pilots for our younger generation. She has her mum who fully understands how she is feeling. You can't put a price on that. You can be her voice with the doctors when she is feeling confused. You can strongly encourage the doctors to give your daughter the best possible care. Not only as a mother, but as a knowledgable sufferer.

I hope everything goes well and rant whenever you want.

Take care

Shazbat x

My beautiful daughter who is 26 has recently been diagnosed with RA too and my heart is breaking for her. I got this horrid disease whern I hit 50. There are days she can harly walk and now uses a stick to walk!! All I can do is walk this path together and support her all the way. I feel for you as a mum and your daughter. Take care of each other x

carotopgal profile image
carotopgal

I'm so sorry! But it does help to have someone that understands what you are going through. My mother had Lupus, and my sister has Lupus, and I have RA. Although Lupus and RA aren't the same, my sister and I can relate to each other about how we are feeling and are there for each other when we just need to rant/vent. Hopefully your daughter can get her's controlled quickly and won't have a hard time of it. Gentle hugs!

Karen77 profile image
Karen77

I agree with the others. As horrible as it is, you're lucky to have each other. I have a friend with Lupus and without her and this forum, I would feel completely alone in this.

Also, the absolute WORST thing anyone has told me since I've been diagnosed (at age 34) is "BUT YOU'RE SO YOUNG!" It honestly just made me feel more of a victim than necessary, so please try not to dwell on her age. Her life isn't over because of this diagnosis. We don't stop being who we are because we have RA, though sometimes the RA has greater say that we'd like.

Gentle hugs to you and your daughter.

medway-lady profile image
medway-lady

Its so hard to understand why this condition affects each one differently, some severe and some like me not so bad. It must be a huge worry but your daughter may be lucky and treatments are so good now it might have very little impact on her life. I really hope so, and I do tell people I do not suffer with RA I live with it. Being positive is so important and whilst she might need some support you'll be best placed to understand how she might feel.

earthwitch profile image
earthwitch

My mum used to say she felt guilty at passing on inflammatory arthritis to me, but really there was absolutely no need for it. Its just something I have to live with.

As far as your daughter goes, don't automatically assume she will go through anything like the pain or disability that you might have had - remember she has been diagnosed early for a start, which means more chance to get it under control before damage is done. Also, there are now far more treatment options for her. I have friends diagnosed in recent years who have got their disease totally under control within a year and are back to normal. You may not see those people on message boards like this, because they aren't disabled, and don't need the kind of support that some of us oldtimers who didn't get optimal treatment at the right time do.

Stay positive, get her to join one of the arthritis societies to inform herself as much as she can and get support from people her age (Arthritis Care, NRAS, etc) and she will likely be fine.

kalel profile image
kalel

I am sorry to hear about you and your daughters diagnoses. Your daughter is very young and there is so much valuable information out there about arthritis and different ways that you can treat it. If you can check out some of the podcasts made by someone called Clint Paddison. He has a facebook page and you tube page and it has tons of info on there that you might want to check out.

facebook.com/RheumatoidArth...

paddisonprogram.com/dr-klap...

paddisonprogram.com/dr-moni...

Pands profile image
Pands

I have just seen this and am sorry to hear. I am the other way around- I was the 28 yr old daughter diagnosed with RA 18 years ago. My mum then developed RA about 4 years ago when she was 70. I do have to add that she was diagnosed quickly because I pushed her at high speed to the Dr when her thumbs were sore because I knew what I was looking for (and at).

As the others have said, your daughter (and my Mum) will hopefully benefit from the medication that is available now. At 44 I have proper RA damage with bent fingers and fused joints. I am very hopeful that your daughter will not have theses issues, there is so much more available treatment. I do feel for her, it is a big diagnosis to take in. Best wishes to you both.

You may also like...

Daughter starts treatment

My daughter recently diagnosed with RA after birth of second baby. Aches in knees which progressed...

Daughters job prospects

hope I’ve posted correctly. My almost 18 year old daughter has juvenile arthritis and is currently...

Newly diagnosed with 2 questions :-)

Hiya. I'm a newly diagnosed 33 year old RA sufferer, I'm a Homemaker to 22m old twins and I was...

Diagnosed with Fibromyalgia today

Hi I have had RA for about 8 years now. Having struggled with extreme fatigue for the last 9 months,

Newly Diagnosed at 29

everyone, I have recently been diagnosed as early stage RA, have been in excruciating pain with my...