CAMI CLUNE: FROM ASKING FOR VOTES
TO ASKING FOR HELP
MOST of you might remember Cami Clune as one of the Semifinalists on NBC's The Voice Season 19. (Original post below)
WELL, it has now been 10 long months and Cami STILL isn't feeling better. Through much testing we have learned that there is a lot more going on than we originally thought. We are finally getting some answers, and so we figured it was time for an update.
Initially - we were told that on top of Ehlers Danlos Syndrome, Cami had Dysautonomia and possible Mast Cell Activation Syndrome. We have been addressing the Dysautonomia-like symptoms and her circulation seems a little better as the blood pooling in her extremities has lessened, although the fatigue is still horrible. She definitely has some good days, but most days are just crippled with fatigue. We tried to address what seemed like MCAS, and did not see any improvement.
The biggest AND SCARIEST problem for her that she is still experiencing is constant air hunger.
People get air hunger confused with shortness of breath. Air hunger is the sensation of being unable to take a full breath. She has no issues with coughing or wheezing or anything that would seem like the “normal” shortness of breath lung symptoms. It just, almost constantly, feels like she cannot get enough air. This obviously comes with quite a bit of panic, and this has been going on for ten months now. With Cami being a singer, actress, etc. THIS SYMPTOM ALONE has made her world come to almost a complete halt, as it has made it so difficult to talk or even sing most days. (Although she has had some good days / moments and for that we are thankful!)
Her world is so shattered. She lives in constant fear that in any moment her air will cut off and she will once again feel like she is suffocating. Imagine feeling like you're suffocating off and on throughout the day and night and never knowing when it's going to happen…it is extremely frightening and traumatizing.
Obviously this is also also taking a huge toll on her mentally. The anxiety and depression she is going through is the worst it has ever been. She is going through so much mentally and physically.
This lead us to believe there MUST be WAY more going on than we thought. So we have sought out another specialist, an Environmental, Integrative, and Functional Medicine physician. She believes Cami has Chronic Lyme Disease with confections as well as encephalopathy. (Infection triggered autoimmune brain inflammation also known as ITABI or PANS). As she would put it "Cami's brain is on fire."
Lyme and coinfections can cause several debilitating symptoms (Dysautonomia-like symptoms being one of them, which is why we initially started treating for that.)
The doctor suspects this is a chronic infection that may have been in her for years (which may have been the cause of many of her other health problems growing up). It would appear then to go into remission until another virus or pathogen would come along and kick it into gear all over again.
It's just NEVER been this bad.
Two of the coinfections are Bartonella and Babesia. I will attach a really interested article about them below. These cause so many awful symptoms..... but babesia specifically causes AIR HUNGER! We are learning so much. These two strains can be the most severe (Bacteria and Parasite). We are waiting for all the bloodwork to be done and come back. We literally had scripts for 50 tests. It is just taking so long to get them all done, as It's a lot of blood to take all at once.
I have learned a lot over the years. One thing I have come to know is that if it is Lyme, you MUST seek help from a Lyme Specialist, as it’s just too complex. I'm thankful we found one. There aren't many out there.
To start, Cami will be taking many medications, supplements, and doing other therapies to fight inflammation and infection. We will adjust as needed as tests come in and how she responds.
This specialist does not take insurance and I completely understand why. (Topic for another day!) It is all still very costly though. We are SOOO thankful for what has already been donated! Having the financial stress lightened by peoples generosity has been so incredibly helpful to us. Worrying about her health alone has been stressful enough. Sadly, she isn't even close to being done testing and treating and it's almost depleted. Some of you have donated services too and for that we are so grateful. It is so helpful to keep Cami in good spirits.
Some of the labs have had to be sent out of NYS and are not covered. The other 48 (no lie!) will go through insurance but our insurance started fresh again and we have an extremely high deductible.
We are continuing to do Neurofeedback. It is much needed and it definitely helps her mental health. I HIGHLY recommend this to anyone!
Anyway - thanks for everyone's support! Your donations have helped immensely!! We WILL get this all figured out and she WILL get better.
Please feel free to share!
ORIGINAL POST - BEGINNING OF THE BATTLE:
MANY of you might remember her from the charitable organization she started at age 8 called Backyard Broadway. She used music, theatre, and dance as a platform for raising money for families with children who had chronic or life threatening illnesses.
By age 16, she and her team had raised over $50k for them.
And maybe just SOME of you might remember that she too suffers from a chronic illness called Ehlers Danlos Syndrome (EDS). She struggled all her life with health issues not knowing what was causing them. She wasn't diagnosed until she was age 17.
She was managing her illness quite well the past few years. Then sadly, about 10 months ago her health started declining once again.
Fast forward: Cami has recently been diagnosed with DYSAUTONOMIA. Dysautonomia is a disorder that negatively impacts the part of the brain responsible for unconscious bodily functions such as heart rate, blood pressure, breathing, digestion, pain control, sweating, and temperature control.
As you can imagine this disorder has completely knocked her down.
Coming home from LA after The Voice was both exciting and exhausting for Cami. The demands for interviews, podcasts, collaborations, speaking engagements, performing, product influencing, fundraising, filming commercials, etc were actually a dream come true! She even began recording her own original music - another huge dream of hers! But behind the scenes, she was still fighting life long health battles. They were becoming increasingly difficult, and she was trying to keep them private. By December of this past year, the struggles became too difficult to hide and she had to take a break from performing (again). Since then, her health has rapidly declined.
For the past 5 months, Cami has had constant horrible respiratory issues making breathing difficult. The extreme shortness of breath has made it so difficult for her to do ANYTHING, let alone TALK or SING! As if that wasn't frightening enough, Cami also started having tremendous blood pooling in her extremities. She developed constant lightheadedness, dizziness and extreme fatigue making it almost impossible to do anything. At the high point of her life so far, Cami had to put her singing and acting career (her total income) on hold.
She couldn't even handle the physical demands of even part time employment. This has been devastating.
There were no simple answers for all these news symptoms. Our family set out on a quest to find answers and once again it was not an easy path. We have consulted with so many medical professionals and have put her through a battery of tests. She has also been to several urgent care centers and hospital emergency rooms. As you can imagine, constantly not being able to breathe is quite terrifying!
Tying to find answers and help for her symptoms has come at a great expense. At age 21, Cami is already drowning in medical debt. Our family is doing the best we can to help but the expenses are have become too much for us to even take on. Although some of the health care providers do take insurance, our high deductible plan doesn't cover anything. (Imagine 17,000 family in network, 20,000 out of network deductibles!)
The GOOD NEWS is we have begun to find more answers! Knowing she has DYSAUTONOMIA is the key to Cami’s healing as we now know how to treat it.
It actually goes hand in hand with EDS!
(Click on photo)
Doctors also suspect she has Mast Cell Activation Disorder (as you'll see in that diagram) but we are unable to afford the testing right now. It is very common for EDS patients to have the dreaded “trifecta.”
The diagnoses don't stop there…
Tests also revealed a significant iron deficiency, mild asthma, and mold toxicity which ALSO contribute to these debilitating respiratory issues.
We have mold tested everywhere Cami spends her time and thankfully we are clear. We have to assume mold issues must be from an unknown previous exposure and she must eventually go through a detoxing process while also trying to raise her iron levels.
But there's more good news! Cami has found a therapy that is working!
Neurofeedback helps retrain the nervous system and disregulated brain wave pattern is also commonly associated with Dysautonomia. She is already experiencing relief but it is going to take several months of therapy in order to see more permanent results. Once again, this is going to cost her thousands of dollars.
We are asking for financial help for Cami so that she may be able to pay some of her previous medical bills and to be able to afford the necessary therapy and further appointments and testing.
Cami’s goal is to perform again very soon! And with any donations left over she plans to to start a new organization that will help people with chronic illness be able to afford necessary services that are not covered by insurance.
Cami has had health issues since she was a toddler. As a young child, she experienced so much pain, horrible digestive issues, vision problems, constant dizziness, fatigue, brain fog, etc. The list of unexplained symptoms is actually too long to list. We spent thousands of dollars searching for answers and searching for relief for her. We were blessed to have found several great (many natural) health providers to help her manage her difficulties. Despite all of her battles, Cami pursued her passion of musical theatre and managed to push through most of it with unbelievable success!! But by 11th grade, the medical issues were getting worse and the pain was unbearable. She had to stop performing. She became deeply depressed and filled with much anxiety. After some time, she eventually discovered different styles of music and it completely opened her world!
By age 17 she had some answers but not all. She was finally diagnosed with EDS. Having a diagnosis was so important because the constant worry of "what is wrong!?" was answered and we could focus on how to heal. Functional Medicine, Physical Therapy, Chiropractice Care, Massage, vision therapy, and many alternative therapies helped her through. All of course, not covered by insurance.
Eventually, her pain had gotten better, but many other issues still continued. We continued to treat the other symptoms as best as we could. We must have been doing something right for a while because she ended up on Season 19 of NBC’S The Voice placing in the semifinals! Thankfully she was feeling pretty good when she got that call to go to LA! It wasn't as easy as it appeared though. She struggled daily while out there without her therapies and without access to her restricted diet. Her faith, passion and persistence got her through and we were thankful that by the grace of God she was not “in a flare” while out there.
Dysautonomia is a disorder that negatively impacts the part of the brain responsible for unconscious bodily functions such as heart rate, blood pressure, breathing, digestion, pain control, sweating, and temperature control.
Dysautonomia can cause many different symptoms and may be categorized into different names such as Postural Orthostatic Tachycardia Syndrome (POTS), Orthostatic Intolerance, and Neuro-Cardiogenic Syncope.
Dysautonomia has also been associated with digestive disorders such as Irritable Bowel Syndrome (IBS) and Small Intestinal Bacterial Overgrowth (SIBO).
There is no single cause of dysautonomia.
EHLERS DANLOS SYNDROME
The Ehlers-Danlos syndromes (EDS) are a group of hereditary disorders of connective tissue that are varied in the ways they affect the body and in their genetic causes. The underlying concern is the abnormal structure or function of collagen and certain allied connective tissue proteins.
They are generally characterized by joint hypermobility (joints that move further than normal range), joint instability (subluxation [partial separation of the articulating surfaces of a joint]) and dislocations (full separation of the surfaces of a joint), scoliosis, and other joint deformities causing joint, nerve and muscle pain and weakness.
Skin hyperextensibility (skin that can be stretched further than normal) and abnormal scarring, and other structural weakness such as hernias and organ prolapse are also common .
MAST CELL ACTIVATION DISORDER
Mast cells are central players in your immune system, where they stand guard (release mediators) at the places in your body that may be exposed to foreign invaders, such as your skin, respiratory tract, gastrointestinal tract, and genitourinary system. They’re also found in every organ and most tissues throughout your body.
In people with Mast Cell Activation Disorder, mast cells mediators are released too frequently or abundantly, and/or in response to triggers that are not typically considered to be harmful, for example; foodstuffs or chemicals in the environment. Inappropriately triggered inflammation among individuals with MCAS leads to a wide range of symptoms that affect multiple systems in the body.
Specific triggers and symptoms of MCAS vary greatly between individuals, and additional triggers can include fragrances, exercise, stress, and changes in temperature.
Mast Cell Activation Syndrome (MCAS or MCAD)
The following symptoms are common in patients with MCAS, but every patient is different and different patients have different sets of symptoms:
Hives, itching, flushing, angioedema, acne, eczema, fleeting rashes
wheezing, nasal congestion, nasal itching, hoarseness, recurrent sinusitis, shortness of breath
dysautonomia, hypertension, hypotension, chest pain, passing out
abdominal pain, diarrhea, constipation, nausea
headaches, anxiety, dizziness, forgetfulness, brain fog, episodes of rage
lethargy, fatigue, malaise, low grade fevers, night sweats, unexplained weight gain or loss.