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Our journey to CPNC

Our journey to CPNC

Our journey to CPNC 

With a series of blogs and a 50% off on all tests, Dante Labs is thrilled to work with Dazzle4Rare to make Whole Genome Sequencing accessible to more people and help them live a better life. 
This is the story of Becky and Lisa and their way to the Nerve Center.

About #Dazzle4Rare

Dazzle4Rare represents a group of non-profit communities, patients, and caregivers across genetic and acquired conditions. Banding together means to finally have a voice, thanks to social-strategies in order to reach each other’s friends and family networks. 
By sharing stories, people have an opportunity to raise a greater awareness and, finally, to be heard. 
The more they speak up and speak out, the more likely they are to reach those who may need to hear their message the most.
Dante Labs is happy to give its voice and help them share their words.

Series 4: Central Pain Syndrome

Central pain syndrome is a neurological condition caused by damage to or dysfunction of the central nervous system (CNS), which includes the brain, brainstem, and spinal cord. This syndrome can be caused by stroke, multiple sclerosis, tumors, epilepsy, brain or spinal cord trauma, or Parkinson's disease. The character of the pain associated with this syndrome differs widely among individuals partly because of the variety of potential causes. Central pain syndrome may affect a large portion of the body or may be more restricted to specific areas, such as hands or feet. The extent of pain is usually related to the cause of the CNS injury or damage.

Some primary causes of CPS are: Stroke, MS, Epilepsy, Head & Spinal Cord Injuries/Surgeries, Cancer, Aneurysms, Tumors, Infections, Shingles and many more. Patients describe non-stop pain in one area, many areas or the entire body. Differing types of CPS pain may include burning, freezing, shocking, aching, crushing, stabbing/cutting, spasticity, cramping, and more.

CPS affects an estimated 3 million sufferers in the United States, with many, if not most, undiagnosed and/or treated ineffectively. Generally, the pain is far worse than the causative injury or illness would typically produce, with the damaged areas working like “kindling” in a fire to involve ever greater numbers of neurons. CPS can be aggressive, never ending and disabling, making normal life immensely painful and incredibly difficult.

Central Pain Nerve Center: Becky and Lisa's story

We each began our patient journey more than a decade ago on opposite sides of the country, with Becky in Washington and Lisa in Florida. We were pulled together by technology and Central Pain Syndrome, getting to know each other over the internet. While desperately seeking answers about our mysterious health conditions, we experienced first hand, the lack of quality information regarding Central Pain Syndrome, intractable pain and our rare health conditions.

We teamed up and eagerly set forth to improve education, support and advocacy for others enduring this type of health journey. 

Becky’s short story: In April 2007 I was 36, an RN and newly widowed. Mentally and physically Iwas wiped out, so I hauled my exhausted body to Mexico for some R&R.
At the resort, I developed an intensely painful skin condition over several areas on my right side. I asked to see their Doctor on staff (which was listed on their website) but quickly found out that he didn't exist. Back in the U.S., my excruciating “Rash” was diagnosed as Disseminated Shingles.

My doctor said "I'm so sorry, but your pain may never go away”. Shingles had
damaged my nervous system, causing Central Pain Syndrome, Geniculate Neuralgia, and recently, CRPS.

In my darkest moments, I'm compelled to advocate for patients who struggle with CPS, Intractable Pain & rare conditions. This led me to Lisa Davis Budzinski, and our CPS, Rare Disease & Intractable Pain Advocacy.

Lisa’s short story: In 2003, my patient journey started during my professional legal career of 20+ years. After a series of ER visits and remaining undiagnosed because during those decades thyroid tests weren’t performed in the ER departments. Thyroid cancer from Grave’s Disease with goiter came front and center. It was huge and obvious. With Grave’s Disease you have incredible amounts of energy! Unfortunately so much so, I could not get 2-3 hours of sleep
each night. The pulse stays very high around the clock which is very hard on the adrenal and endocrine systems. What also wasn’t known was a stroke occurred at the same time. As well as a heart attack. After thyroidectomy my energy levels immediately fell through the floor. It took years to obtain a correct diagnosis of Central Pain Syndrome, post-stroke. I also live with auto-immune diseases, hyper coagulation and a few other conditions. During one of the many inpatient
hospital stays uncovered Stiff Person Syndrome, a Rare Disease.

Both conditions cause Intractable Pain on a daily basis with a very low quality of life.

Merging together: Luckily, the internet was growing fast and we met in an early version of a chat room (R.I.P. Yahoo groups) made for CPS patients. We quickly realized our syndrome had a small online community, and suddenly, we were no longer alone.
We started our patient advocacy with a small team of about 6 people who met in that early support group. We held meetings over conference calls, then later on video chat, discussing our plan of attack on CPS. This resulted in the birth of the Central Pain Syndrome Foundation, where we both served on the board for 3+ years. Eventually, the two of us made a linear move to become Central Pain Nerve Center.

We created the “Nerve Center” to provide useful CPS, intractable pain and rare disease resources to those who need it.
On social media we share health information, articles, posts, interviews, support, laughs, etc.

We participate in webinars,podcasts, tweetchats and healthcare conferences, both in person and virtually, learning the latest and best information to distribute across our patient communities.
Our networking extends to patients, caregivers and healthcare providers in the U.S. and around the globe.
By staying true to our mission,” Research, Educate and Advocate”, we can help patients thrive, not merely survive.

Advantages of getting the Whole Genome Sequencing for Central Pain Syndrome

Genetic tests for people with Central Pain Syndrome were far from routine as they used to be limited and too expensive. Whole Genome Sequencing is changing the scenario, as it is comprehensive and gives better chances to yield diagnostics results, change lives. They are not intended to diagnose Central Pain Syndrome  — no known mutation leads to the condition every time -  but results can substantially alter the course of treatments or prevention.

  • Genetic testing provides insight into the bigger picture
    It will identify mutations and defects that cause insidious injuries not easily seen by other test techniques. Identifying whether you carry a genetic mutation your genetic mutation can help you determine if you are eligible to enroll in certain clinical trials, the correct one for you.
  • Individualized treatment 
    People with a specific genetic mutation will produce better responses and more effective therapies.
  • For families
    It offers you the chance to enlighten your family members of the potential predisposition: through precise genetic testing results; you can get a glimpse of the probability of a family member getting a given gene-linked disorder.
  • For the entire community
    It helps you to find the right way forward. Beyond benefits for the individual, sequencing exomes may be the only way scientists can uncover the full list of mutations related to autism. Understanding the connection between Autism and genetics can help us understand how the disease develops and ultimately how it can be treated or cured.

Dante Labs will offer its continued support: Whole Genome Sequencing and Whole GenomeZ at 50% off using DAZZLE4RARE discount code.

Together is better!

 

 (Lisa Davis-Budzinski, http://centralpainnervecenter.com/, @centralpainnervecenter on IG, @Cpnervecenter on Twitter)