Scleroderma & Raynaud's UK (SRUK)
7,050 members3,358 posts

My daughter Lauren

First time poster, I am going to support as much as I can going forward not for me as I don't have the condition but for my daughter Lauren who at 28 passed away on 28/04/2018 and was diagnosed too late with Scleroderma which had attacked her body and led to her death. We as her family had no idea as to the condition and neither did Lauren until it was too late as her body completely failed. I hope to raise awareness of this condition in the hope that other people may recognise it earlier to prevent what we are going through losing our little girl. Please can you help me understand as much as I can about the condition which attacked her organs so I can engage with other people about it when I start doing the fundraising for you.

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I really feel for you losing your little girl like that. To describe Raynaud and sclerodorma is far too complicated for us to explain. I suggest you contact the Association Scleroderma and Raynaud.

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Thank you so much for reply its a very difficult time for us I am trying to get as much info. as I can so I know what I am dealing with here. Thank you.

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DearLauren0011s mum

I am so very very sorry that you have lost your daughter at such a young age. How my heart breaks for you and the family.

Please accept my deepest sympathy. I have just 🙏 for you. Please take care and best wishes in your endeavors for Lauren’s cause.

With ❤️ 🤗 & 😘

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Thank you so much as her Father I can't describe what its like losing my little girl to something I know so little about. Thank you.

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So welcome dear... I wish I could be there to give each of you a loving hug. Bless you all.

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I’m so sorry to hear the sad news about Lauren, she was so young. I got diagnosed in 2014 and it affected my body quite badly very quickly.

Sounds like a good idea to talk to the Scleroderma association for information cos everyone is different as Zenabb says it’s very complicated to explain.

Did Lauren have anything wrong with her before she got really ill?

As a 21 year old I was diagnosed with Rheumatoid Arthritis but it disappeared about 10 years later, strange cos this is another autoimmune disease. I got to 60 and then got really ill.

Good luck in your endeavours for Lauren, I’m sure she’d be very proud of what you are trying to do, at least you have your good memories to remember her.

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Thank you for reply we now know she had Acute Renal Crisis which led to Accelerated Hypertension and her heart couldn't cope. Its some comfort to know what happened, as discovering it earlier would have been very lucky. That's what I hope to get across to people is get to your GP early as you can and don't be afraid to ask them to test for it. Lauren was told it was Fibromyalgia and thought no more about it until too late. Thank you.

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Hello Lauren, so very sorry for the loss of your daughter at such a young age, my thoughts are with you and your family. Regarding information, contact SRUK office and they will send you all the seperate leaflets about Scleroderma and Raynauds.

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Hello there, I am so sorry that you have had such a terrible experience of losing your daughter in such tragic circumstances. I am sure that the confusion about what was wrong with her made it very hard to deal with. Scleroderma is such a rare condition that it is often tricky for people to diagnose. I am not sure where you are living but I have put some links to UK and US sites. I know that SRUK would be very grateful for your fundraising, and all of us on here who are living with the condition appreciate the efforts that you are making despite your own grief.

All my very best

Lucy xxx

sruk.co.uk/

nhs.uk/conditions/scleroderma/

scleroderma.org/

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My thoughts are with you and your family at this very sad time

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Oh dear… I'm so sorry to hear what your family has been through. Life can be so unfair. I can understand how this all came about as the disease is so difficult to diagnose in the first place. So many different symptoms that manifest independently and so it takes a long time for the medical specialists to link them together. Also the different symptoms vary in their severity from patient to patient so there's not a familiar pattern or a set of circumstances for doctors to recognise. The awful thing is scleroderma attacks internal soft tissue so eventually various organs begin to struggle. Most of us here have to undergo lung function, kidney and heart checks, gastro-intestinal etc etc. Then there's the aches and pains experienced by those who have a rheumatoid element to their condition. I think this disease was known as CREST syndrome, now they're more likely to refer to it as System Sclerosis part of which is Reynauds and Scleroderma; so you might find the terminology that is used somewhat confusing. All these conditions are caused by an autoimmune disorder. I was told my immune system is in overdrive so I have to take immune suppressants - I believe this is the case for most of us here. I was also told "we can't cure you - we can only try to manage it." I feel like this disease is a silent insidious thing that takes hold quite unnoticed.

I know non of this can heal your pain, I feel so sad for you especially as Lauren was so young. I hope you can learn to hang on to the happy memories of times you've spent together. I know everyone here will join me in sending you a big hug - kind thoughts - and wish you some peace of mind in the future.

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Thank you so much for your kind words I am getting involved with Fundraising and trying to increase awareness of the condition, this helps to numb the pain a little. I do hope that you keep well and have continued support, Lauren had a small chance of getting through but her little body couldn't take it, bless her. The condition had got hold of her Kidneys giving her renal crisis followed by accelerated hypertension, heart damage and lung damage so her chances were slim. - thank you

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How dreadful for you, my thoughts are with you at this very sad time x

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Thank you for your kind words.

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There is a lady called Jay Virdee who suffers from and campaigns for research into this disease. She has a page on Facebook uk.gofundme.com and also if you Google Jay Virdee you will find more information. You are in our thoughts.

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Thank you

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Dear Lauren's Dad, I am very sorry for your loss of your daughter, Lauren. Daily life is hard and much more difficult if health problems occur. I will pray for your continued strength. Please reach out anytime you feel the need. It is a blessing to connect with others struggling with illness. Take care of yourself. I know there is no cure, but I recommend an organic diet with nutritional supplements, namely Shaklee. God bless you and keep you strong.

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Thank you

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Hi I don't think anyone can imagine their worst nightmare coming true such as the loss of your daughter Lauren. The overwhelming grief and sadness must be almost paralysing and I do feel such sympathy and understanding for your loss. I admire your positivity in doing this memorial fund raising and please ask if there is anything I can do to help. I hope the day will come when the pain will ease enough for you to begin to remember all the good times of Laurens childhood, the terrible teens and her growing into a beautiful young women, As others have said this a complex illness and generally people (including sometimes family and friends) cannot grasp what it involves so your wish to educate people can only be for the good, Take care.

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Thank you

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So very sorry for your loss, my heart goes out to you, stay strong and know that all our thoughts are with you, God Bless x

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I am so so sorry for your lose. I was only diagnosed in Dec so still trying to get my head round the very complicated nature of the condition. I ran London Marathon in april and am hoping to do an ultra marathon next year which is 62 miles to help raise funds and awareness (god willing I will still be able to). My thoughts are with you and your family, so much so I'm off to call my dad x x x

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Hello...I am so sorry that you lost your beautiful daughter to this awful disease...I lost my father just before christmas I looked after him with mum for four years he was diagnosed with Scleroderma/scrogens an overlapping autoimmune condition..as you can imagine myself/mum and brother didn’t have a clue what this was all about...we were told there was not cure for this condition but it can be managed with drugs...unfortunately as each year went by we could see and lived with his condition each day and we attended every hospital appt. between London/Portsmouth/Gosport (Blood tests/scans (lots of)/walk tests/blow tests/consultant appts/heart catheter tests...it was overload...!!) the autoimmune condition attacked dad internally unfortunately his lungs which caused lung fibrosis and Pulmonary Arterial Hypertension he also had Raynauds. It’s a disease whereby your immune system decides to attack your own body and this can be either on the outside of your body or internal organs...the last 14 months of his life were very hard it got to a point where his breathing was so difficult he couldn’t hardly walk and was on oxygen. Dad collapsed last march at home with a blood clot was taken into hospital and from there he did deteriorate he had a lung infection which caused phumonia but did not die from this it was the lung fibrosis that took his lungs from him including the pressure of the PAH...like you we still am shocked where and how this come on him my father was a fit man before this was not a drinker or smoker and was a shipwright for Portsmouth Dockyard he died at 75. We believe that Scrogens was in him from around 68 as he suffered with dry eyes and dry mouth but the Dr put this down to blood pressure tablets but it obviously wasn’t so this condition escaped silently in him...you only really know you have this condition when you have a breathing problem and can’t do normal day to day things without struggling with no energy my father went to his GP and had numerous tests from March 14 and was finally diagnosed at Hammersmith Hospital in London November 14 we then had to see a Rheumatologist at Gosport War Memorial Hospital February 15 whereby dad was poorly and thats when the Rheumatogogist confirmed that dad had an overlapping auto immune condition Scrogens/Scleroderma he was then put on some toxic drugs for this and also had to have steroid/chemotherapy to try and holt this condition. Dad did put up with an awful lot of side effects to tablets that he was put on and at times he just felt he didn’t want to continue with the drugs..but as a family we hoped that it would help but realised that there was no cure for this condition...the only thing we feel as a family there is no real support at the beginning of diagnosis for not just the patient but for the family too who have to also live every minute there suffering. I feel having gone through this “journey” I understand and can see where support could be improved but obviously this is down to money with the NHS...At the time dad was diagnosed he was the only person in Gosport to have this combination I think there are persons in. Portsmouth and all over the uk/world wide but when a person is feeling so low/ill or can’t walk its not possible for the patient to attend meetings (i.e. Q.A. Hospital Portsmouth) about there condition and the meetings were not local to where my parents lived. I can only hope that one day there will be a cure for these auto immune conditions...not too sure where you are based in the UK but can talk more if you would like...I do understand...apologies for my long response....best wishes Tina

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Thank you Tina, so sorry to hear about your Father, we too as a family are struggling to get our head around the fact that Lauren has gone, the Hospital tried so hard to help her with regular talking to the Royal Free Hospital in London , who are the world leaders in the field to help remotely but try to get her transferred to that Hospital, but they never had a bed available. It seems that the areas that need improvement are the early diagnoses which in Lauren's case was too late and research into these conditions also we had very good doctors at the hospital but I felt we could have been told a lot more as to what was going on, they seem to say that they could only tell us so much as Lauren was there patient, but she was in no state to understand. I realise there are rules to this regards confidentiality but we stayed by her bed every day. One final thing is I would have liked the hospital to have contacted me after her death I would love to have had a conversation with the Rheumatologist and ITU staff too ask a few questions so we had a clearer picture, see what they had to say, they did a great job I just need some more information and they were so kind to say thank you. Philip I suppose they are concerned regards to litigation etc but I have no intention of doing anything I just want to know more about it all.

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I’m so sorry for your loss. It brought me to tears. I’ve had CREST since I was 36 years old.

I’m 65 now and have full blown systemic sclerosis. I was diagnosed with Pulmonary Hypertension four years ago, and was diagnosed with Lymphoma 2 years ago. I’m now down to 120 lbs and nauseous 24/7 as my gastrointestinal symptoms have become intolerable. So glad you are planning on fundraising for this terrible disease and hopefully soon this disease will be more we’ll known and researched to find a cure or at least be able to treat it effectively! God bless you!

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Thank you for sending your reply I do hope you get some comfort back into your life, I miss Lauren so much if I can help people become more aware and get some further research funds for the condition I know Lauren maybe would be proud of her Dad.

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