Scleroderma Is Complicated to Explain and Challenging to Live With

Lisa Weber avatar

by Lisa Weber |

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“Look, Mom!”

My teenage daughter bounds excitedly into the room to show me her phone. The screen displays a message adorned with fancy scrollwork designs. She reads the words “June is Scleroderma Awareness Month!” Her smile radiates happiness.

I know I should be elated that awareness is being spread through the popular social platform TikTok. But my heart aches every time my children talk about my disease.

Since they were born, I’ve wanted to protect them. This was just another reminder that I can’t protect them from the harsh reality of this illness. It changes the way I look and dictates what I can do. It fills my days with appointments, and the medical expenses drain our pockets. And now it has found its way into my daughter’s free time.

It’s not easy to explain.

I asked my beautiful girl what she would say to someone if they asked her to explain scleroderma. At first, she described how the condition makes it hard to breathe and causes the whole body to feel pain. Then she looked at me and said, “I’m not sure what it is.” Her face was so sad. She looked disappointed in herself for not knowing how to answer my question.

I immediately reminded her that this autoimmune disease is rare and challenging to understand. After all, many doctors would have a hard time explaining it! I’ve heard many stories about patients watching their doctors Google it while they sat there awaiting treatment.

If someone asks me what scleroderma is, I try to keep it simple and straightforward. It’s a disease that has no cure — yet! It attacks the body inside and out. It can make the skin hard. It often shrinks all the features on a person’s face, making their nasal passage and mouth smaller. It may go after internal organs, scarring them badly and causing damage that can be life-threatening. But most importantly, it affects every person differently, so doctors have a hard time treating each patient.

It’s grueling to live with.

Rarely has this explanation been enough. After explaining the issues it can cause, the door usually opens to suggestions. I strongly believe essential oils, healthy diets, and alternative medicine are beneficial. But these things cannot cure scleroderma.

If I’m truly going to help spread awareness, I need to include the cold, hard truth behind this disease. Like many others, I have tried everything and I’m still not cured. From eating completely organic, plant-based diets to diligently using essential oils, my disease continues to progress. In fact, it seems that the healthier I am, the stronger my cells are, and the harder they attack my body.

Before people can offer suggestions, I find it helpful to explain how this disease is like having an allergy. The body overreacts for no good reason. I also use transplant patients as an example. A new heart may be seen as a foreign object, so the immune system will fight to kill it. Although my organs are my own, my body is still trying to destroy them.

Scleroderma is a debilitating and relentless disease. It constantly attacks the body, but the cause is unknown. It can affect people of any age, sex, or race. Even healthy and fit people can develop this autoimmune condition.

The one thing we know with certainty is that people with scleroderma are warriors! They are living with a painful disability while praying to survive another day.

Help us fight by spreading awareness.

Spreading awareness doesn’t have to be time-consuming, nor does it require financial resources. Simply sharing the name of the disease helps tremendously.

Take a moment to share the word “scleroderma” on your social media accounts (TikTok, Facebook, Instagram, etc.). You can simply write, “June is Scleroderma Awareness Month.” Or, you can share websites, articles, or even columns like this one.

The more people hear about this rare disease, the more recognition it will get. This helps patients, organizations, and lawmakers gain more leverage for funding research that could be the key to a cure. Maybe one of those 14-year-old TikTok users will be inspired to be the hero that finds it!

If you want to get more involved, you can organize fundraising events in your community, design merchandise to raise money for research, or perhaps share your personal story on social media. Encourage others to learn more by visiting informational websites or reading patient blogs. Big or small, every effort to raise awareness makes an impact.

Help us raise awareness and improve the lives of those suffering from scleroderma. There are so many of us that are fighting for a chance to survive this battle.

***

Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.

Comments

Amy Burch avatar

Amy Burch

I'm in my 11th year since diagnosis. I finally retired last year which at least gave some relief as I did struggle. Every day is a struggle but I wake every morning and thank God for his grace. The worst thing is people don't understand and any reference to my health makes me feel like I'm complaining, which I don't want to do. I pray for strength every day. Thanks for sharing your story.

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Lisa Weber avatar

Lisa Weber

People not understanding you is another reason we need awareness. Our community of fighters understand what you are going through. You are not complaining, you’re surviving! Keep fighting! You’re doing great, Amy!

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Debra Tirado avatar

Debra Tirado

I agree with everything you said, especially explaining scleroderma to family, friends and just people who ask what do you have. I have the internal problems and shrinking of the mouth. Thank you for making me feel I am not alone. Now it’s off to another doctor’s appointment.

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Lisa Weber avatar

Lisa Weber

Praying for a cure, Debra! Hoping you get some good news at this appointment!

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David Sparrow avatar

David Sparrow

Lisa, thank you for your article; I and I'm sure others find it very supportive. I'm a 70 year old male and have had Scleroderma for only a couple of years, but it's still difficult to convey to my family and friends what's going on in my body without sounding like I'm complaining or exaggerating. I'm so sorry for what you and others are dealing with, but I hope like me, you remain ever optimistic. God bless you.

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Lisa Weber avatar

Lisa Weber

David, staying optimistic is spot on! It’s also up to us to teach people that we’re not complaining. Every day is a battle and sometimes we just need support. Sometimes we just need to hear that we’re doing a great job! Keep sharing and teaching others. Stay strong!

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Haroldene Hanstead avatar

Haroldene Hanstead

My daughter has been diagnosed with scleroderma. She takes one step forward & two steps back. One day ok then she has a flairup . She is 47 yrs.old with a bad back as well . I wish I could take the pain away from her. She is also being treated for Chrones disease. Some days I don't know what to do for her. She has a good doctor but he can only do so much for her.She needs some support & so do I. It would help if there were a support group in our town in Kenora On.

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Lisa Weber avatar

Lisa Weber

Haroldene, you sound like an amazing mother! Just keep caring and being there for her. It’s definitely important for you both to have others for support too. I recommend online groups, like on Facebook. When there’s someone that seems like a good fit, message them. We are all looking for connections and support. You will definitely find someone you can connect with. Once you do, video chats are awesome! Build your army so you don’t have to battle alone!

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Carol Langenfeld avatar

Carol Langenfeld

Thank you, I couldn’t have said it better.

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Lisa Weber avatar

Lisa Weber

Thank you, Carol. Best wishes to you!

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Laura Mollrich avatar

Laura Mollrich

Thank you so much Lisa for this beautifully written and caring article. I plan on forwarding it to some friends and family members. Even though I have had this horrible disease attack my brain, heart, lungs, entire GI tract since the early 1980’s, they “still don’t get it”. I try very hard to always look my best so I end up *fooling* everyone. They don’t see how hard it is just to get up out of bed every day. I have fought this disease with all the strength I can dig up. My wonderful husband, and two horses (I’m a competitive ParaEquestrian Dressage rider. I am thankful every day for what God had blessed me with, that’s what keeps me going forward.

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Lisa Weber avatar

Lisa Weber

Laura, I’m not sure they’ll ever truly understand. But it helps when they try! I bet your horses bring you lots of comfort. I find that animals seem to “understand” and I feel at peace around them. Maybe it’s because they don’t have expectations that I cannot fulfill? I’m happy you have support from your horses and your husband. Keep fighting for those daily blessings! I’m praying for all of us- that it gets easier and we get stronger!

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Jeffrey avatar

Jeffrey

I have had scleroderma for over 20 years , the first 5 to 10 were the worst going to work as a maintanence engineer was a real struggle.
Ater years of medication changes we finally got it somewhere near right , feeling much better i took up push bike bike riding to clear my head .
Worked my way up to 200ks a week with less pain but then i injured a toe and had it removed then two more and finally the leg through infection .
This whole saga has bought the scleroderma back with a rengance so back to my professor to try andget the meds right again 😊👍

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Lisa Weber avatar

Lisa Weber

Oh no, Jeffrey! I’m so sorry this disease has slammed you back down. Setbacks are emotionally and physically draining. But if you keep fighting, you will be standing tall again. I wish you a quick journey back to the top! You’ve got this!

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Ann Marie Fear avatar

Ann Marie Fear

I really liked your article! I have scleroderma, it is hard to explain to everyone and do they really understand? There are so many things I want to do, but can’t, because of difficulty my hands, elbows ! I have 4 kids they keep me going!!

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Lisa Weber avatar

Lisa Weber

Thank you, Ann Marie. Unless you have it, you cannot fully understand it. But if they understand it’s like living with the flu every day, or living with sprains on multiple limbs, maybe they will understand our limits. And that’s just a sample of the devastating symptoms we have. Even so, no one expects you to go out to eat when you have the flu. Nor do they tell you to suck it up when you sprained your ankle. We just need more compassion. We are doing our best! The fact that you keep going makes you a warrior! Keep fighting!

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Mary Ann McCloskey avatar

Mary Ann McCloskey

Thank you for your article! I am in my 78th year and have been diagnosed with s.scleroderma over 15 years ago.
Still carrying on and have been blessed with a wonderful medical team. The more people know the better.

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Lisa Weber avatar

Lisa Weber

I love hearing this, Mary Ann! Keep on going!

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Veronica F. Forde avatar

Veronica F. Forde

Hi Everyone,
My name is Veronica F. Forde, and I have had the disease for about 40 years. I do not take any medication, and I have never done it. What I found that about the flares up with me is that they are caused by emotions disbalance and stress. So, I try to keep my emotions balanced, and not to have stress of any kind. I do all my work ahead of time, so I don't get stress out. It has helped me tremendously since I am almost pain free. I do not get emotional with anyone, and I try to solve all my emotional problems before they affect my body. It works. I do not let anyone to stress me out, and I choose how to react (positively) to any news I hear. I do not overreact to anything. I see the positive side to everything instead of seeing the negative side of things. I stay away from any negative people. I also pray constantly. All these strategies have worked for me for years. I hope some of this information helps someone.
Veronica

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Lisa Weber avatar

Lisa Weber

Veronica, this is great advice. Stress is definitely a trigger.

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lorraine jones avatar

lorraine jones

Lisa you have been a strength for all of us do not know how you can with all of us coming your way. I regret not doing anything this year with scleroderma awareness month. Perhaps next year in North Carolina. I have been struggling lately but hope it was just a bad few days. Lets all keep fighting team we can do it!!!!

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Lisa Weber avatar

Lisa Weber

We are a team, Lorraine! A strong one! On those bad days, just remind yourself that good ones will come and you’re going to enjoy every one of them!

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lorraine jones avatar

lorraine jones

Hi everyone we all know these flareups some days come out of no where. I tried to hide it which always made things worse. So with that said I say I need some time time if people over help yourself thanks for a great husband and host and say enjoy and go to another room to relax 15 minutes or so and it works like a charm not to try to fake "I feel great" and if does not we know and just take a day for yourself. No excuses "this is my day" Lorraine

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Lisa Weber avatar

Lisa Weber

Great advice, Lorraine!

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Lisa avatar

Lisa

Hello Lisa,
Thanks for the positive article. I never know how to explain what it is either and I feel like some others that people just look at you like you making things up. I don't necessarily look like anything is wrong with me to most people. My physical appearance has definitely changed since getting Scleroderma. I went through depression at first because I was 38 and healthy when it started. I am not 59 and use to the issues and flare ups now. I am also a cancer survivor so I have been through a lot in the prime of my life. Scleroderma does something for you it makes you a much stronger person than you ever thought you were. I have recently stopped working the stress was very bad on my health. I hope that 1 day they come up with a cure so that others don't have to deal with this...kudos to all the warriors out there.

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Lisa Weber avatar

Lisa Weber

Lisa, over 20 years with this disease makes you a champion! And to overcome cancer too- You have to be so strong! Best wishes to you!

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Monica avatar

Monica

I was diagnosed with limited systemic scleroderma almost 5 years ago. I’m a teacher too :) I teach 4th grade. I’m not on any meds except for acid reflux. Some days I feel pretty good, and others I can barely function. I follow a modified autoimmune protocol diet and avoid foods that drive inflammation. I know this disease will progress at some point, but for now I’m going to keep working, gardening, and hanging out with my dogs :) Wishing you the best!

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Lisa Weber avatar

Lisa Weber

Monica, some people don’t have progression! Get that out of your mind and stay strong. Let the bad days be reminders of how strong you are- you keep getting back up! Keep fighting!

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Finn Cosgrove avatar

Finn Cosgrove

The various forms of suffering that you folks have makes me think that, perhaps, I haven't got scleroderma and that my GP is right when he says no.
I have GAVE syndrome and the bleeding in my stomach put me into hospital with angina and the need for a blood transfusion. I have linked this up to a red rash on my feet and lower legs and have concluded that, since GAVE is said to be linked to SSc, then this creeping rash is a manifestation of scleroderma.
All my life I have been breathless on the slightest exertion and I now understand that collagen deposits have mucked up the function of getting venous blood back to my heart.
Anyhow, my clinical experience of my body seems to be different from what others have described and I may have joined the wrong club.
Yet, I have enjoyed writing about my condition and thank you for giving me this opportunity.

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Lisa Weber avatar

Lisa Weber

Thank you for sharing your experience, Finn. Writing can be a great way to release the feelings that hold you so tightly. As for a diagnosis, at the end of the day it doesn't matter as long as you are receiving quality care. If your doctors are helping you manage symptoms, you can fight your battle. Autoimmune diseases are complicated to diagnose and often they overlap one another. I can't help you figure out if you have scleroderma, but I can tell you that you're welcome here! We are all fighting our bodies and we can all relate to how difficult that is! Best wishes to you, Finn!

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Simone LaRosa avatar

Simone LaRosa

I just found out I have it after a couple of years of misdiagnosis and lots of trial and error with medicines and blood work and CTscans and MRI's. Your article was helpful. Thank you

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Lisa Weber avatar

Lisa Weber

Simone, I'm so sorry it took such a long time to be diagnosed. That's frustrating! It really helped when I was seen by a scleroderma specialist. There are only a handful around the world, but they are the ones you want leading your team. I see mine once a year and we try to make a little vacation out of it since it's 14 hours away. Even if you don't go this route, make sure you find a rheumatologist that has experience with scleroderma. Staying ahead of the disease is important. It sounds like you already are since you didn't give up! Keep fighting and stay strong! You've got this!

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