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The Secret that Could Kill You

May 28, 2019

 


My heart is racing a mile a minute as I sit down to write this blog post.  I haven't posted to my blog since around Thanksgiving in fear of revealing a really personal secret I have been dealing with on a more profound and vulnerable level.  If you're following me on additional social media platforms you may already know that I am suffering from a laundry list of auto immune conditions and I am one of millions of people who are suffering from chronic illnesses who keep pushing forward to be the best they can possibly be.  I have already begun sharing more of my journey on instagram and connecting with people going through similar circumstances.  I believe that while discovering one's own truth and secrets more healing can come from sharing them with others.  There may be someone out there thinking they are all alone when they really aren't at all.  

 

This secret is a secret that can kill me and it has gone on in fact without medical attention for years but, boy not for lack of trying to figure out what has been ailing me. Correction, KILLING me slowly! But, the secret is one that could also kill you!  And, so I have vowed to find my voice to bring awareness and advocate for this secret that I have released myself from and is no longer my personal secret to keep                     called Lichen Sclerosus.  If you never heard of Lichen Sclerosus you are among many that haven't either - including myself.  I didn't learn about it until I was sitting in a gynecologist exam room days shy of my 48th birthday this year with my legs spread open on "stir ups" to possibly the 15th doctor that has seen my "cookie" in all of it's damaged glory in the past few years. Correction, VULVA - I'm not going to sugar coat the seriousness of this blog post even though I am feeling a loss for words in my attempt to bring awareness.  I will push through as I do with life and life as I know it. For whatever reason blogging takes so much more out of me emotionally.  So much more that I have been neglecting to share what I feared was a dark secret. I thought long, hard and questioned ever revealing such personal details of my life and body. This most recent discovery and diagnosis is something that has gone without medical attention for way too long and there are so many people suffering in silence for fear of feeling embarrassment and shame.  While this forum may be my very own little space online to blog and share my journey in life and work, something has kept me from being able to share here.  I have been keeping this part of my life a secret from my personal blog even though I'm pretty much an open book and welcome feedback from readers, so I need to really work on changing that.

 

So now that the cat is out the bag on my blog, what exactly is Lichen Sclerosus?

 

The short version of what Lichen Sclerosus is NOT - otherwise referred to as ( LS ) :  It is NOT contagious! So no need to think you are going to get cooties if you feel the urge to give a hug to anyone who may admit to being afflicted with this condition!  Your hug and support may very well get someone with LS through their day.  Hugs are free so go ahead and give them freely!

 

The short version of what Lichen Sclerosus is:  An inflammatory skin condition that primarily affects the a female's vulva and could also present on a male's genitals.   Young children could also be affected but, the cause is unknown as it is seemingly reported to be mostly rare.  

 

I can get into more findings and reports but, I'm not claiming to be a doctor or a scientist and if specific scientific cases and proof is something you wish to look into I am not exactly ready to explore all of that just yet.  I'm just trying to wrap my head and mind around continued pain management and doing my part of bringing awareness for early detection.  It's definitely not easy trying to find the appropriate words to convey something that has been making me feel like I'm less than a woman and broken for a very long time.  So please forgive me for taking baby steps to share and learn           more myself.  

 

Symptoms for LS reported by adults: Burning, itching, repetitive tearing of sensitive areas of skin causing bleeding, loss of anatomy, fusing and atrophy and can also affect anal region, painful sex or impossible to attempt sexual penetration.  Left untreated is can lead to Vulvar Cancer and Penile ( Genital ) Cancer.  

 

If you google this condition and read reports of it being a rare condition or rare disease, as well as the instances of doctors reporting it to be rare - it is something I am going to dare to question and will continue to question from here on in.  In just the last month since going through with an alternative treatment called Tulip Therapy,   I have learned of many cases and have communicated with many online and around the world that are part of closed support groups while searching for some form           of group support.  Their names and details will remain anonymous as I will only share my own experiences and those of which I have been given a green light to do so.  If you want to learn more about The Tulip Therapy I received and am healing from, I will do my best to share in another post and update on my healing process.

 

In the meantime, I have submitted for Grant Funding to Giuliana and Bill Rancic's

promotion of Astellas Oncology C3 Prize.  Entry for Consideration of Grant Money. 

 

The category and my submission reads as follows: 

 

* What category are you entering your idea into (categories are:)

Cancer Care Journey | Ideas to help improve the patient experience, ease decision-making, and navigate everyday care.

 

* Describe the problem in cancer care you are trying to solve (500 words or less) Imagine losing part of your anatomy practically over night and being told by the medical professionals that everything looks fine every time you have the courage to visit doctor after doctor and specialist after specialist. Imagine having debilitating symptoms like your skin tearing, burning and itching relentlessly as if a thousand red fire ants are attacking your genital skin, biting you and seeding their poison into your blood to wreak havoc over your immune system and you cannot cease the crawling sensation no matter what you do. You seek help for years only to go misdiagnosed and or undiagnosed and you're being advised to seek psychological evaluation and possibly consider an anti depressant under a psychiatrists' care.  Now imagine your genital skin fusing while you are suffering relentless burning sensations and itching and trying to live your best life without any hope for relief day in and day out and are trying to find ways to cope with a horrible secret for fear of feeling shamed and embarrassed. Would it make a difference if this were happening to young children too? It is happening and unreported cases are all too common for what is called Lichen Sclerosus. Deemed as a rare auto immune disease ( if you're lucky enough to get a clear diagnosis ) it is often a gateway to vulvar and genital cancer left untreated. I didn't attend medical school but, I do know I'm of sound mind and I'm not so sure it is at all rare as much as it is undetected. With early detection there is hope that the condition can be managed more effectively and hopefully preventative. NOONE should have to face this horror alone and NOONE should have to suffer in silence.

 

* Describe your solution to this problem (500 words or less)

1- Advanced Medical Training

2- Public Awareness

3- Eliminating the Stigma of Self Care

4- Local and Global Support Groups

5- Fundraising Events

6- Research

7- Clinical Studies

8- Alternative Treatments

9- Chronic Illness Conferences and Pain Management

10- Community Outreach

 

* How will you use the Astellas Oncology C3 Prize to bring your idea to life? (500 words or less) By finally enabling the funding, research, awareness and national support that has not been made available as of yet. It would assist people and their families suffering from this affliction by promoting intensive medical training for each and every doctor to recognize early signs and symptoms and prevent Vulvar and Genital Cancer.

 

I have written and shared a poem and ask that if you suspect you or someone you know is suffering in silence please keep scheduling doctor appointments to get the answers to what is ailing you.  It can save your life and or someone else's by detecting early prevention.

 

Click on the arrow on video below to view poem set to music and feel free to like, comment and share on my blog here.  

Instagram: Christel Jules

Facebook: Christel Jules

Video is also available on my youtube channel:  Christel Jules 

   

 

 

 

 

 

 

   

 

 

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