My great sympathies for your loss .Scleroderma is awful .I suffer from it and the pain is terrible as do the increasing amounts of disability .I've no family and at times feel so ill , You are making a great contribution .
It is hard to imagine losing a child especially when in the prime of her young life. I admire how you are dealing with this, until I saw your story, it is a condition I was unaware of. I have 3 children and to lose one is unimaginable. You have raised a phenomenal amount already, I will support you whenever I can. My wife has Lupus, which involves weekly visits to JPH. Luckily, hers is under control. When the time comes that the awful condition that took your daughter is completely curable, you can hold your head up high Phil, in the knowledge that her passing was not in vain. She will certainly never be forgotten.
Sorry for your loss. My wife 38 is going through this exact same thing. Eyes, ankles, hands. Swelling up. Turning white and somtimes res/purple at the tips. I have a question for you and it's, if you were to go back in time, what would you have done differently? Would there be anything to help? I'm really scared and the stress level in very high at home.. Reading Google is terrifying and I have no one to talk to about this...
I hope pharmaceuticals invest more money to understand this terrible disease. They think there aren't many people with this disease, but they are wrong. Many of us struggle for years to get a right diagnosis. They don't have a great knowledge about Scleroderma so they don't even suspect it. In my case a pseudo Scleroderma specialist, misdiagnosed me. 😢 I've been struggling due to that and doctors were telling me that is fibromyalgia. I don't even know how I really am due to the lack of knowledge from doctors. 😢 I ask pharmaceuticals companies that please invest more on this disease. And maybe we could get a treatment that can stop it? 🙏🏼🕯️❤️☀️ Please 🙏🏼😢
Hi my name is Diane could you please help me I have been diagnosed with SR since January this year I have not been able to eat even some times not been able to take my tablets Nexium 40mg which is all i was given from the hospital, get very little help here in Bulgaria were i live now. I have not been given no Medication just the Nexium and no dietary plan, soup is about the best I can eat I have lost 40 Kg in weight can you help me !! many Thanks Diane Kilshaw
Hi Diane, of course, we'll do our best! We have a couple of videos with Dr. Elizabeth Volkmann on gastrointestinal tract involvement and what foods might help alleviate symptoms. ua-cam.com/video/9gDL8JJyi1Q/v-deo.html ua-cam.com/video/7xY9nORxsw8/v-deo.html We also have lots of resources on our site, both about GI tract involvement and scleroderma as a whole - www.sruk.co.uk/publications/ will take you to a page full of booklets, and of course the 'Scleroderma' section of the site is a good place to look as well. Do let us know if you need any more support - it's probably best to reach us at info@sruk.co.uk so that we can reply promptly. Hope this is helpful!
My great sympathies for your loss .Scleroderma is awful .I suffer from it and the pain is terrible as do the increasing amounts of disability .I've no family and at times feel so ill , You are making a great contribution .
Poor dear. I’m sorry she suffered so badly in her what should be vibrant 20s. Sorry for the family’s loss.
I am honoured to know Philip and have the greatest respect for him. Whenever we meet I part very pleased to have seen him again.
He is a star.
He truly is!
It is hard to imagine losing a child especially when in the prime of her young life. I admire how you are dealing with this, until I saw your story, it is a condition I was unaware of. I have 3 children and to lose one is unimaginable. You have raised a phenomenal amount already, I will support you whenever I can. My wife has Lupus, which involves weekly visits to JPH. Luckily, hers is under control. When the time comes that the awful condition that took your daughter is completely curable, you can hold your head up high Phil, in the knowledge that her passing was not in vain. She will certainly never be forgotten.
So sorry to be have to reading this. I suffer from this awful disease . No one realises the constant battle. Thank you for all you do you brave man xx
I’m sorry to hear the loss of your beautiful daughter.
Thank you Philip, I have just been diagnosed.
Do let us know if you need any support in your scleroderma journey!
🙏😔🌻🌻🌻
Sorry for your loss.
My wife 38 is going through this exact same thing. Eyes, ankles, hands. Swelling up. Turning white and somtimes res/purple at the tips. I have a question for you and it's, if you were to go back in time, what would you have done differently? Would there be anything to help? I'm really scared and the stress level in very high at home..
Reading Google is terrifying and I have no one to talk to about this...
I hope pharmaceuticals invest more money to understand this terrible disease. They think there aren't many people with this disease, but they are wrong.
Many of us struggle for years to get a right diagnosis.
They don't have a great knowledge about Scleroderma so they don't even suspect it.
In my case a pseudo Scleroderma specialist, misdiagnosed me. 😢 I've been struggling due to that and doctors were telling me that is fibromyalgia.
I don't even know how I really am due to the lack of knowledge from doctors.
😢
I ask pharmaceuticals companies that please invest more on this disease.
And maybe we could get a treatment that can stop it? 🙏🏼🕯️❤️☀️ Please 🙏🏼😢
Hi my name is Diane could you please help me I have been diagnosed with SR since January this year I have not been able to eat even some times not been able to take my tablets Nexium 40mg which is all i was given from the hospital, get very little help here in Bulgaria were i live now. I have not been given no Medication just the Nexium and no dietary plan, soup is about the best I can eat I have lost 40 Kg in weight can you help me !! many Thanks Diane Kilshaw
Hi Diane, of course, we'll do our best! We have a couple of videos with Dr. Elizabeth Volkmann on gastrointestinal tract involvement and what foods might help alleviate symptoms.
ua-cam.com/video/9gDL8JJyi1Q/v-deo.html
ua-cam.com/video/7xY9nORxsw8/v-deo.html
We also have lots of resources on our site, both about GI tract involvement and scleroderma as a whole - www.sruk.co.uk/publications/ will take you to a page full of booklets, and of course the 'Scleroderma' section of the site is a good place to look as well. Do let us know if you need any more support - it's probably best to reach us at info@sruk.co.uk so that we can reply promptly.
Hope this is helpful!
😔😔😔