We are a community for those with connective tissue disorders to discuss our specific, and sometimes strange, skincare needs.
This community is not all about me, I’m just your cruise director. But, if you want to know more about the cruise director, here it is.
I hope that, together, we can find solutions to our unique skin issues, raise awareness of connective tissue disorders, and find friends along the way.
I'm glad you are here.
Staci McKnight Maney
I have worked as a mixed media artist for about 14 years. The pandemic brought my business to a complete halt because people are not going to galleries like they once were, art shows were canceled for a year, and honestly, the stress of the entire situation completely dried up my creative juices. Art is a luxury item, so in these uncertain times, people just aren’t purchasing like they were 2 years ago. I hope to start painting again and exhibiting as soon as my family and I feel it is safe, but we are definitely not there yet and I don’t expect to be there for another year. We are still isolating and have been since March, 2020. If you would like to see some of my work, you can check out my artist website at http://www.StaciMcKnightManey.com.
I am a wife and mother to 3 girls. My girls are the best thing I’ve ever created. My husband and I have been married for 19 years and he still takes my breath away. What more could I ask for?
Our eldest is my stepdaughter, so she does not have to worry about my EDS genes being passed on to her, but my 2 younger daughters also have hEDS. My hope is that with early diagnosis, they will never have to go through what I have been through.
My hEDS diagnosis did not come until I was 43. I’m 46 now and, in spite of the pandemic, I have gotten more issues treated in the past 3 years than the entire 43 years before. I had not heard of EDS before my physical therapist suggested it to me. I just knew that I was a house on fire and had been for most of my life. Doctors would run tests, the tests would come back mostly normal and they would say that there was nothing they could do.
Rinse and repeat.
For 43 years.
I actually walked away from seeking medical treatment for 18 years due to complete frustration and medical trauma from being told that there was nothing actually wrong with me and it was all in my head. When I started researching EDS, the symptoms and indications were like reading a history of my life. It explained so much! Since diagnosis, doctors have taken me more seriously and I have been able to get real treatment that helps for the first time in my life. I’ve also allowed myself to accept my limitations. I will now use a wheelchair when I need to (which fortunately is not often, at this point), I know to brace my joints after a subluxation or dislocation, and I allow myself to rest when necessary.
I’m sure my story sounds familiar.
Due to my hEDS diagnosis, I sought out a MCAS specialist and was confirmed to have MCAS through a 24 hour urine collection. Getting my MCAS mostly under control (not quite there yet) has been life changing. Truly. I did not know what it felt like to not be in some type of reaction. Now that I am on proper medication, I look back and realize that what I thought was normal was extremely abnormal. I really don’t know how I survived in as bad of shape as I was.
Having a treatment plan for my hEDS and MCAS has stopped the burning of my house on fire. Now I’m sorting through the rubble and trying to find the causes for the remaining issues. Before, I couldn’t tell what issues/pains came from what because everything was too much. Now, I am able to differentiate problems and hope to find solutions to my remaining issues.
I’m on my way to having a better quality of life than I’ve ever had. I am hopeful about my health for the first time in my life!
That said, I still struggle daily. If I can get 4 hours of productivity in a day, that is a good freaking day. Pain, both acute and chronic, are still part of my daily life. My spoons run out fast. I’m sure many of you can relate.
Short facts about me:
If there is anything else you would like to know, simply ask!
I created this community and decided to make skincare videos because I LOVE skincare.
I’ve always (ok, since my 30s… in my 20s, I didn’t even consider taking care of my face.) felt that skincare is more important than makeup because one needs a good surface to apply the makeup and because I don’t enjoy wearing foundation. I needed my skin to continue to look good on it’s own. Once I received my EDS diagnosis, I knew that skincare was even more important because I should do something to protect and heal my fragile skin... so I started researching.
I’ve really gotten into watching many of the skincare influencers and dermatologist influencers on YouTube. I am obsessed. BUT, I can’t apply many of their recommendations because I am concerned about how specific products or processes may affect my unique zebra skin. So I searched for someone that talked about our needs and realized that there was a void in the skincare influencer genre.
I figured it was time to fill that void.
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