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Chloe has scleroderma and talks about the impact on her life
At first, she described how the condition makes it hard to breathe and causes the whole body to feel pain. 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! If someone asks me what scleroderma is, I try to keep it simple and straightforward.
It attacks the body inside and out. It can make the skin hard. 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. 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. 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. Simply sharing the name of the disease helps tremendously. 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 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.
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. People not understanding you is another reason we need awareness. Our community of fighters understand what you are going through. Keep fighting! 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. 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. David, staying optimistic is spot on! Every day is a battle and sometimes we just need support. Keep sharing and teaching others. Stay strong! My daughter has been diagnosed with scleroderma. One day ok then she has a flairup. She is 47 yrs. 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. It would help if there were a support group in our town in Kenora On.
Haroldene, you sound like an amazing mother! Just keep caring and being there for her. I recommend online groups, like on Facebook. We are all looking for connections and support. You will definitely find someone you can connect with. Once you do, video chats are awesome! Thank you so much Lisa for this beautifully written and caring article. The real trick is to find genuine thanks for the hardships that come by too. I want to learn their culture, history and ways of life. I love music, and would love to be able to pick up an instrument and play it well. I want to learn the guitar and put the work in to master it. I think having a second language is an incredible skill.
Living in a new place is a great incentive to master the language spoken there. Likewise, house prices in certain parts of France are a steal compared to England! Like music, food brings people together. A chef has the same special ability as a musician- they can bring and bond people together by virtue of their craft. For the longest time I associated food with the supermarket! The thought of being self-sufficient and growing my own organic produce is a lovely one. Combining this with the community venture I mentioned above could be another idea.
Strangely, I very rarely sit down and do either these days. However, I still intend to have a studio for myself in my future house. Hopefully, that would provide the incentive to start it up again. I want to spend my time with people that inspire me. Hopefully, achieving anything on this list of dreams for the future will help make it happen. To have my own kids would be a magical experience. To know it you have to experience sadness too. By nature, it waxes and wanes. As such, to pursue constant happiness is to set yourself up for failure. Contentment is the opposite. Contentment exists independently. To be content is to want for nothing. And that seems a beautiful state to aspire to. Happiness is great, but, for me, contentment offers the key to longer standing joy.
For that reason I intend to cultivate contentedness in my life. This is another relatively new dream of mine, but after my first proper attempt at surfing in Bali last year …I was awful! It seems like another awesome way to spend an afternoon. She was doing the Via Francigena Pilgrimage- an epic km thru-hike. The last item on this dream list of mine is to stop talking for a while…. First, because I get tired of how busy my head can be and think a week or two of silence might help. There you go then: my dreams in life; a dream list of 40 personal goals and aspirations.
Having a concrete and public list of goals is a recipe for greater action! Were there any on there that resonated with you as well? What is your dream, or what are your dreams in life? Drop me a comment to let me know! You deserve to give your dreams a chance- I hope this post will help inspire you to do it. And please do subscribe to the blog too! Disclaimer: I hate spam. I promise to never bombard you with emails or share your personal information. You just made my day! Thank you! Van Life. Outdoor Quotes.
Life Struggles. Quotes for Life. Digital Nomadry. Buying Guides. Travel Insurance. March 6, Goals and Ambitions. The ones below generally tick none of those boxes! I intend to address the finer details one step at a time… Anyway, with all that said, here are 40 of my dreams in life. And I have no intention of stopping any time soon. I hate money and I love it. To Be in Control of My Time my dream of life lived well My dream is to walk through life acting like time is my primary currency. To Earn Passive Income My dream future involves earning a living through passive income.
To Write a Book This one is in pole position on my mental list of aspirations. To Read as Much as Possible Say hello to another loose goal! My little girls sway back and forth in their ruffled dresses. My face is fixed with a glowing smile as I watch the home video of these sweet babies. Their mouths fumble the multisyllabic word, producing the cutest versions. My heart still aches for you, even more now. Your invisible illness was just that — invisible. Normally, I would welcome this gift on a sweltering summer day, but today is different. I reluctantly enter and scan the room…. Many books have been written about finding your true love.
However, when scleroderma forced me to seek out care…. Date night with my husband resulted in mounds of clothing piling up on the bench in my closet. I was having a meltdown similar to that of a teenage girl with a zit on prom night. Nothing fit. My stomach had suddenly…. I stare at them and try to backtrack through my day, but I have no idea. All my mornings collide together. Can you recall a time when you smiled so much that your cheeks became sore? Or maybe you have a chronic illness and wear a smile all day to avoid ruining the party for everyone…. The pounding of my heart echoes clearly in my ears. I can see the thumps through the skin on my chest.Slerodema Personal Goals if Slerodema Personal Goals do get sick and my lung function worsens, or God forbid Terra Travel Informative Speech die? Your email Slerodema Personal Goals will not be published. The william shakespeare background provides Slerodema Personal Goals incredible opportunity to break away from Slerodema Personal Goals norm, be your own Slerodema Personal Goals, and earn money Slerodema Personal Goals the go. Slerodema Personal Goals might be a political cause, an environmental issue, a Bless Me Ultima Fog Analysis cause, and so on.