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Help for my dad

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In April of this year, my dad began to develop symptoms of joint pain, extremity swelling, and shortness of breath. It took several months for him to be diagnosed with scleroderma, possible lupus, and pulmonary hypertension and sadly, these diseases are taking a significant toll on him. Despite the treatment he is receiving from a scleroderma clinic, his skin tightening, tendon friction rubs, and flareups of joint pain, he does not seem to be getting any relief. I hope that there is a light at the end of this tunnel, and I was hoping that many of you who have been on this journey for quite a while could share some type of inspiration for my dad. He has many days where he thinks he's dying and all he can do is cry. I know the battle is not easy. For holiday, I was hoping that some of you on this forum could help me. I would like to put together a notebook of inspiring stories from people who have been diagnosed with scleroderma. Maybe you have some tips for him, recommendations, things I have provided you with relief, or could you share your personal journey and how you persevere. It would mean the world to me to give my dad some hope and I believe the only people that can help me are those that experience this disease. Please feel free to respond to this post. Thanks!!

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I feel for you and your dad.  Ten years ago, my 18 years old son, was diagnosed with sine scleroderma, then switched to UCTD. I had never heard of the disease and started reading Doctor Google.  BIG MISTAKE!!  I was sure my son would die soon.  It's been ten years and he's still around enjoying life.  The doctor started him on Plaquenil after diagnosis and he does have internal issues, but they are taken care of as they come. I have no knowledge of the pulmonary hypertension as that hasn't affected him.  

It's hard for your dad and it's hard for you.  So many of us understand but each person affected has different issues.  It's not like the measles where everyone gets a fever/rash or the flu where everyone has the same aches/pains/headaches, etc. 
I can only recommend that he read the medical articles from here and avoid the scary Dr Google articles.  Chime in and ask questions, and someone will point you in the right direction.
You're in my thoughts,
Mom to Gareth, 28 years old, DS/ASD

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Hi Emjbush,


Welcome to Sclero Forums!  I'm sorry your dad has scleroderma and am happy that you are trying to help however you can.


In our own special way, we've already done as you've requested.  We've published the Voices of Scleroderma book series, which feature over 100 unique patient and caregiver stories in every volume -- from all around the world. Each book also includes articles by world experts in scleroderma and pulmonary hypertension.


The stories are uplifting, sad, and everything in between. They are also sorted by type of scleroderma, so people can zoom in on their type, if they wish, to find people with stories perhaps similar to theirs.


But the overwhelming thing we have found in sorting through over 1,000 stories on our main site, is that the illness is like a snowflake. No two cases are ever the same. Yet the human spirit shines through it all -- our collective will to join together to help each other make the best of things or come to grips with the worst of things.


It can fortify a patient or caregiver to see examples of people who have already walked the path.  Taking courage from their example can help build our resilience.


That said, one thing many stories point out is how helpful it was to seek wise counselors and get evaluated and treated for depression that often accompanies autoimmune diseases, because depression can trash quality of life far more than scleroderma can.


What I've learned, from decades of living with scleroderma and decades of being here, is that scleroderma, and any life-threatening illness, changes how we look at the world. It makes us either re-evaluate what we want out of life, or to try to escape the re-evaluation. We either milk the sadness and grief for all it's worth and stay there, or we experience it, seek wisdom, and grow stronger, somehow.


Many of us have grown strong enough to contribute our remaining talents and energies to the cause of scleroderma, worldwide, through our nonprofit agency here, or through others. 


Many have found the time, freed up from work, to develop or devote themselves to their real passions, such as writing or art, or even making an impressive swirl of toothpaste on our toothbrush each morning, to declare to the world:  move over, we're still here, with no plans of going to our glory, at least, not today.


Today, we'll cry if we must. We'll laugh if we can. We'll try to sprinkle some joy and happy memories about, like fairy dust! Tomorrow will, quite simply, just have to take care of itself.



Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


The most important thing in the world to know about scleroderma is sclero.org.

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Morning....Shelley mentioned depression.  I forgot to say that when initially diagnosed, Gareth became severely depressed.  I was told that the same autoimmune issues that affect the rest of the body also affect the chemicals in your brain.  Please, tell your dad to talk to his doctor about this.  He won't be the first to suffer from depression with this disease and it may help him immensely in fighting it.  Stress is NOT good for the body, especially when fighting autoimmune issues.


Take care, Everyone.


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Hi Emjbush,


Welcome to these forums!


I'm so sorry to hear that your dad is suffering such unpleasant symptoms and is feeling so depressed about the disease.


Unfortunately, as the others have advised, scleroderma is a disease which causes painful and debilitating symptoms and does seem to create a feeling of loneliness and isolation. However, the very best thing you've done for your dad is to find this site and the wealth of information and support we have.


I would echo the advice about stress; it can exacerbate autoimmune problems and I think it would be beneficial for your dad to talk to his doctor about this and obtain some help and advice.


Please do have a look at the link Shelley has provided for our patient and caregiver stories; I do hope your dad will receive some comfort and inspiration from them. 


Kind regards,

Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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