Morgan Age 6 EDS Awareness

Introducing Myon-Q and Removal of This Pain Control System

Many with Ehlers Danlos Syndrome experience pneumothorax (lung collapse). This video is a demonstration of removing the Myon-Q System after surgery.

https://www.youtube.com/watch?v=I1vE4g_yby8

My Dear Friend

What happened to my friend!?!

I am sure you have all seen by now how much she is struggling. Praying to God and using all her strength to keep it together and raise her family. She cried out for help this last April to no avail.

{My 16 year old daughter, Jenicee, is in need of assistance...We need at least $600, at this time, for her to see Dr. Paolo Bolognese, MD Neurosurgeon. She has been diagnosed with Cerebellar Ectopia=Chiari Malformation but the NS didn't want to put the Chiari dx down because he didn't feel all of her symptoms were related...of course not, they also go along with tethered cord syndrome! (She also has Hypermobile Ehlers Danlos Syndrome with multiple crossovers, gastroparesis, several types of neurocardiogenic dysautonomia, has had several surgeries -including having just had to have her right knee repaired after a fall-her kidneys are not doing well at all, and many more issues that would take a page to list.) I have already sent most of her medical records from JHH, WVU Hospitals, and DC Children's National to Dr. Bolognese to review. He had his nurse call and tell me that he sees several issues on her imaging that he feels need attention. Jenicee's body is quickly and progressively failing. She went from walking "normally" to needing a walker, to now wheel chair in less than 1 year. She also has went from eating mostly normal to NG tube, to PEG Tube, to G-J Tube. Jenicee has Maryland Medicaid and they will not pay out of state...we have appealed to no end...because she has seen this one NS and and a couple of other local NS, even the "Pediatric Section Chief of Neurosurgery" at Johns Hopkins-that don't know their arse from a hole in the ground, we cannot get approval for any reason unless she sees Dr. B and he can show proof that she needs surgical help that only he can provide. Children's Miracle Network said they may be able to help with surgical costs but she has to be an "established patient."}

Their family has been through so much! I can't even go into how much more there is to say. I wont get that personal today. But I understand why nobody helped. They would have to get ahold of her.. somehow. Then get an address from her to do anything. Well, things have changed since then. She now has a paypal account and the email is jonniejo_mcd@hotmail.com 

I am praying with JonnieJo and her family that somebody
who reads this could possibly help them find hope!

You can help JonnieJo and families like hers by clicking along the right side of this blog to learn more about them.

American Ninja Warrior

Did you guys see American Ninja Warrior? Michael Stranger's wife said she has Ehlers Danlos Syndrome and that for her it is a terminal illness. She has received a ton of backlash within the EDS community because she called it terminal which to many people means that a person is believed to have six months or less of life to live. This is a quote (by permission) about this topic from an EDS support group but warning that it is (at least to me) very intense:

"In just the last week, we've lost five of our zebras from our support groups here on Facebook. They have died from EDS or EDS related comorbidities. There is a common misconception that you have to have the vascular type to die from EDS and that's simply not true. Anyone who tells you EDS can't kill you is either misinformed or is afraid of their own mortality. That doesn't mean it's a death sentence for every person, but we have to be realistic. 80% of our bodies are made up of collagen and zebras have defective collagen. That means 80% of our body parts have the potential to fail on us in some way, which could potentially lead to our death if it goes undetected or untreated. And many of our comorbidities cause other systems to fail in this sort of cascading effect that doctors find hard to diagnose and deal with. In other words, one thing goes wrong, and then it's like dominoes. That can result in disability or death fairly quickly, which is what happened in Barbie's case this week.
So the short answer is, "terminal" is probably the wrong word to use. "Fatal" or "morbid" might have been better, I don't know. I'm not up on the proper terminology. The point they were trying to get across is the seriousness of the disease and I'm very, very glad they did because the seriousness is what's going to bring more awareness for us, which is desperately lacking. Five zebras died suddenly this week. Those are just the ones we know of. They were young and vibrant and better treatment might have saved them."

~By Lael Youngblood Tallini

As always please subscribe and share!
We are desperate for attention on awareness for research and to get questions finally answered.
You can also help by donating to the nonprofits above or the families found on the right side of the blog page.
Thank you for your support!!

Unknown Author

I was thinking today that when we refer to an illness as being “manageable”, healthy people assume we mean we can “live with it easily”–but that isn’t true at all.

My illnesses might not be killing me just yet, but it still infringes upon my quality of life just about everyday. And I’m not saying that for pity. I’m saying it because it’s true and I don’t feel like healthy people understand that.

Manageable really just refers to the ability to lessen the intensity of certain symptoms (Is that even a good way to put it?)

It doesn’t mean I’m cured, or not in pain, or healthy .. at all.

I think this misunderstanding is adding to the lack of compassion and confusing the people around me about what chronic illness is, and what it’s like to live with one.

I think this is why it’s important for us to tell our stories.

~Unknown Author~

Call to Action

Now is your chance! Navigate up to the top of this blog for links to research. To the right are families who NEED your help. LIKE/SHARE!

Donate to what? Can you spell that?

Have you donated to cancer research? That is an excellent way to support chronic illness! Please read through this post:

One rainy Saturday night in February, I stood over a sink in a public restroom, silently washing my hands. I looked over to see a woman at the sink opposite of me; she seemed to be reviewing my reflection in the large bathroom mirror.

Her gaze hovering intently on the pale pink Power Port scar above my right breast, and the feeding tube delicately hung over my skirt. Locating her gaze to meet my eyes, she very frankly asked, “Do you have cancer?”

I shook my head and replied that I did not have cancer, but a rare disease called systemic scleroderma. The woman without a word shut off her sink, reached over to the paper towel dispenser and then turned back to me. “Oh,” she replied, and quickly left the restroom.

I stood wavering between a few different emotions: anger, hurt, disappointment and unbelief. Did my disease really deserve nothing better than a simple “Oh”? I pondered for a moment what this encounter would have been like if the illness I was stricken by was in fact cancer. This stranger probably would have told me that I was brave, and she may have even shared with me stories of loved ones she knew battling cancer. There most certainly would have been a tear shed, and even a silent hug, followed by a “But you’re so young!” and a sincere “Good luck!” Why is it that only one disease seems to command the compassion of others, while the rest are lost and forgotten?

The answer lies quite simply in our media. With recent releases such as “The Fault in Our Stars,” “Me and Earl and the Dying Girl,” “Chasing Life” and “Red Band Society,” disease seems to have recently stormed the media spotlight. Suddenly illness is a hot Hollywood theme, in one fluid motion leaving vampires who sparkle, ridiculously attractive young werewolves, and supernatural romance in its wake. While many people would argue that it brings media attention to those with medical conditions, some of us are not so swayed. The media portrayal of disease is extremely limited, focusing almost exclusively on cancer.

In the Hollywood world, cancer is portrayed to be a disease that only afflicts devilishly handsome young men and women who all face it valiantly with sarcasm and humor. Their stories are full of “cancer perks,” getting away with shenanigans, and young, tragic romance, leaving at least one main character dead. Think on this for a moment. If a “Fault in Our Stars Two” was created, would you watch it? Before you jump to yes, know the plot. It consists of Hazel, after the devastating loss of her love, living everyday life as someone who is terminally ill. It would probably include a lot of Netflix watching and days spent in bed. Eventually her recurring episodes of fluid-filled lungs would increase; she might suffer horrendous pain that no opiate could ever relieve.

No one is interested in watching endless suffering; viewers want a cure, or a quick demise. Chances are, due to that audience preference, you will never see scleroderma, lupus, multiple sclerosis, mitochondrial disease, Ehlers-Danlos syndrome, myasthenia gravis and so many others life-threatening illnesses portrayed in film. These diseases are what you call chronic and degenerative; this means the patient might have these conditions with no hope for a cure their entire life.

Similar to cancer patients, we are bound to oxygen tanks, feeding tubes, trachs, central lines and other medical devices. We take large amounts of prescription medications, have weekly procedures, surgeries, and tests, attend support groups, struggle with severe pain, anxiety, and depression, mourn over the lose of our former lives and unfortunately, must also watch as the friends we have might die. Many of us actually go through aggressive chemotherapy as treatment for our disease.

Unlike these movie and TV portrayals of illness that have become so popular, chronic illness sufferers receive no “cancer perks,” as the cinema likes to call it. All we receive are snide comments about how we don’t look sick, that we shouldn’t be parking in handicapped spaces, and that we would be healed if we only changed our diet and lifestyle. We sometimes even get told, “At least its not cancer!” The world knows what cancer is; however, the majority of people have no idea what beholds a chronic disease sufferer because they have never been exposed to it. Can we truly blame people for their lack of empathy when all the media feeds them are stories centered on one disease?

So, to the woman in the restroom who decided my disease wasn’t enough to even generate a generic positive reinforcement, I do not hold you accountable. Nevertheless, as a patient suffering from an extremely debilitating, and eventually terminal illness that has destroyed my life, I ask that you please recognize that any disease, whether you’ve heard of it or not, deserves compassion. Original Post