Help Support SCLERODERMA #HardWord, #Scleroderma #IC

Help Support SCLERODERMA #HardWord, #Scleroderma #IC

 

I participated in an Influencer Activation on behalf of Influence Central for Scleroderma Awareness. I received a promotional item to thank me for my participation.

Not often does a campaign to support a cause come this close to our family. Many of you probably have not even heard of Scleroderma but this is a disease that affects one of our family members: my mother in law. Unfortunately, there are no known causes and even more devastating, no cures. It’s estimated that 85% of scleroderma patients will live longer than five years after their diagnosis, and my mother-in-law has done just that  She was diagnosed 24 years ago. Keep reading to read a paragraph I asked her to write to be included in this post. So why am I writing this article? June is Scleroderma Awareness month and I want your support. It really only takes a minute of your time, a click of your mouse, and no money. Heck, by reading this article today you may learn about a new disease that affects mostly woman. 

scleraderma

  • Since there is no known cure or cause research is vital, but because so few people are aware of the disease our researchers don’t always get the resources they need. This post will hopefully increase awareness about this disease. 
  • More doctors also need to know about it so people can get diagnosed early. Scleroderma affects thousands of people and few know much about it. Take the pledge to tell one person about the autoimmune disease that has no known cause or cure.
  • Just because Scleroderma is so rare does not mean it does not need more attention. Scleroderma affects only 1 in 906 people. It hits women the hardest with 80% of patients being female. Be sure to read the info graphic for more information.

Scleroderma Aware Infographic - FINAL

My mother in law is truly a brave woman. I can only imagine the pain she is in daily, but she never complains about it. She is just happy to be living and takes one day at a time. She is currently the oldest patient her doctor has seen and truly an inspiration for other Scleroderma patients.

My mother in law had to dictate this over the phone as she had just had surgery on her hand to take away some of the effects of this devastating disease. Her mobility is getting worse and the use of her hands has become a huge challenge. She lives alone after losing her husband to cancer 10 years ago.

24 years ago I was “hit” by Scleroderma. The fact of the matter is finding the right diagnosis and living each day as you would with any other chronic illness. I choose to be as pleasant as possible, I keep all doctor appointments, and I live the life I was granted. I did get a second opinion at the Mayo Clinic but was blessed with a Rheumatologist 5 minutes from my home. Acceptance comes slowly, denial gets thrown in, and life seems to get more limited as the disease increases. I have found out after meeting many Scleroderma patients that no two patients are the same. My Scleroderma is systemic but after 24 years I would like to share with you to find a blessing in each new day.
Mary Lou Long,  Age 72, Buffalo, New York

Please take a moment to take the Scleroderma Awareness Pledge and share it with others as well. 

26 Comments

  1. More of these not well known diseases need to be researched more. Knowledge is power! Thanks for sharing your story.

  2. It’s so sad that the rare diseases don’t always get the attention and funding they need!

  3. What an inspirational story. I’ve never heard about schleroderma before so thank you for sharing this.

  4. I consider Mary Lou a dear friend. We first met when she was the nurse at Eggert Rd Elem. over 10 years ago. She has always been such an inspiration and model of strength and perseverance through any hardship; always positive, encouraging, and greeting everyone with a beautiful smile and brightening everyone’s day, no matter what difficulties she is facing.
    Thank you Mary Lou for helping me understand more about this terrible disease. You have helped me be able to help others and educate them on this and other similar diseases. I always look forward to seeing you. You are truly a ray of sunshine.
    Many happy smiles,
    Dr. Tammy Perison

  5. So many things that people need to be more aware of and we need more research…

  6. Thank you for sharing your story. I learned something new today from you. You’re definitely a strong woman, keep up the good work!

  7. I have never heard of this. It sounds really scary. God bless her!

  8. You’re right. I had never heard of this. Thanks for spreading the awareness.

  9. This sounds just awful. I’m so sorry. Our family has something called Nuerofibromotosis. Also horrible.

  10. Wow, I never knew all of this either. It must be a real tough one to diagnose.

  11. Thank you for spreading awareness about this. I actually had never heard of scleroderma before!

  12. I have never heard of this disease. It is so important to have times dedicated to certain diseases – makes the public aware of the disease. It is great that you are spreading the word. I am sharing your post.

  13. Thank you for all this info on Scleroderma. I really had no idea what to look for or what it meant for those who have it

  14. Thank you for sharing, I have never heard of Scleroderma before. It is great that you know and you are able to share your story with people like myself and make aware.

  15. WOW 24 years has totally beat the odds. Awesome

  16. I have never heard of scleroderma before, but I know there are a slew of chronic auto-immune diseases out there! I’m glad you’re raising awareness for this one. Best of luck to your mother in law!

  17. I honestly had never heard of Scleroderma. I’m glad to now be informed and hope to pass on the word.

  18. I’ve never heard about this Disease but this was informative. It shed some light on a Disease that not a lot of people know about. Kudos to your mother in law for co-writing this post and beating the odds

  19. Your mom in law is a fantastic woman. Attitude is key. Thanks for sharing.

  20. I haven’t heard of Scleroderma before now. It sounds awful I’ll be thinking of your MIL!

  21. Sending good thoughts to your mother in law. It’s great that you’re raising awareness of this disease.

  22. Mary Lou is a personal and dear friend of ours for over 30 years. Mary Lou is the most positive and courageous woman who never lets her illness become a negative influence in her life. She continually strives to live one day at a time always finding a ray of hope in each medical issue. Never a complaint have we heard from Mary Lou. What we have heard and witnessed is joy, concern and genuine love to all of those in her life.
    Love
    Linda and John Heusler

  23. To my knowledge I don’t know of anyone that has this illness but awareness is so important.
    Passing this on to my friends… knowledge is key right?
    Your grandma sounds like she is quiet the woman 🙂
    Praying for her!

  24. I fortunately do not know anyone with this disease, but I am aware of it from my dermatologist. Your MIL sounds like an amazingly brave and upbeat woman. I wish her all the best.

  25. This is the first I’ve heard of Scleroderma. What a horrible sounding disease. I’m shocked to learn about the low survival rate. I will certainly be sharing this to boost awareness and wish your MIL the best!

  26. I had never even heard of this until today. Thanks for the info!

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