Be Kind Everyone You Meet is Fighting a Hard Battle – Especially those on The Journey of Care Fighting a Rare Disease

You may have heard the term “Orphan Disease” and wondered what in the world could that mean? Unless you were able to research the term and take some time to read about it, or unless you know someone who lives with an Orphan Disease, you still may be curious. Orphan Diseases are rare diseases that affect fewer than 200,000 people in the United States. Many are often chronic, progressive, debilitating, and life-threatening. Most are genetic in origin, thus they disproportionately affect children.

 
There are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day due to advances in our understanding of the human genome and commensurate advances in our ability to diagnose genetic disorders.
30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population. Similar to the United States, Europe has approximately 30 million people living with rare diseases. It is estimated that 350 million people worldwide suffer from rare diseases. If all of the people with rare diseases lived in one country, it would be the world’s 3rd most populous country according to the Global Genes Alliance in Rare Disease web site.
In the United States, a condition is considered “rare” it affects fewer than 200,000 persons combined in a particular rare disease group. International definitions on rare diseases vary. For example in the UK, a disease is considered rare if it affects fewer than 50,000 citizens per disease.

Here are some additional facts about rare diseases publish by Global Genes, The Kakkis EveryLife Foundation, The National Institutes of Health and Pharmaceutical Research and Manufacturers of America:
• 80% of rare diseases are genetic in origin, and thus are present throughout a person’s life, even if symptoms do not immediately appear
• Approximately 50% of the people affected by rare diseases are children
• 30% of children with rare disease will not live to see their 5th birthday
• Rare diseases are responsible for 35% of deaths in the first year of life
• The prevalence distribution of rare diseases is skewed – 80% of all rare disease patients are affected by approximately 350 rare diseases
• According to the Kakkis EveryLife Foundation, 95% of rare diseases have not one single FDA approved drug treatment
• During the first 25 years of the Orphan Drug Act (passed in 1983), only 326 new drugs were approved by the FDA and brought to market for all rare disease patients combined
• According to the National Institutes of Health Office of Rare Disease Research, approximately 6% of the inquiries made to the Genetic and Rare Disease Information Center (GARD) are in reference to an undiagnosed disease
• Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease
• The National Institutes of Health estimates that 50 percent of people affected by rare diseases are children, making rare diseases a particularly deadly and debilitating concern for children worldwide. Rare diseases are responsible for 35 percent of deaths in the first year of life and 30 percent of children with a rare disease will not live to see their fifth birthday.

The RARE List™ is comprised of approximately 7,000 different rare diseases and disorders affecting more than 300 million people worldwide. Additionally, here is a List of Genetic Disorders published by About Kids Health. Therein you will see diseases that may be less familiar to you like Batten Disease, Duchenne muscular dystrophy and Neurofibromatosis among many others.

Many families that are on The Journey of Care, with a child who has a rare disease, are left to fend for themselves. Found with very little support in some cases due to less mature condition-specific support network development, little information is available and in many cases these families must raise significant funds through their own efforts as they grasp for every opportunity to help their child. In a recent Charity Miles interview, Gen Gurkoff talked with Julia Vitarello in Boulder, Colorado. Julias daughter Mila has Batten Disease, a rare and fatal neurodegenerative disease. The description of Julia journey in this interview is at times very difficult to listen to but very enlightening. Her description of the experience her family went through — from concern, to shocking diagnosis, to their hunt for a treatment and fund raising effort is inspiring.

They have a ray of hope because, they were able to get a clinical trial approved through Harvard University in Boston Children’s Hospital and are in the process of raising the money in order for the trial to go forward. If you’re as moved by their story as I am, you may want to visit their GoFundMe Page. They need to raise $700K by December 20th to make this happen for Mila and they are getting very close to their goal.

If you know someone on a similar journey it may be helpful to point them to the list of Medicines in Development for Rare Diseases.

Tom Nieman is a Founder and President of The LIV Foundation and a financial services industry veteran. The best place to reach Tom is active on LinkedIn or you can email him at tommynieman@gmail.com

If you want to learn more, need help or know someone who needs help check out the following resources:

The Children’s Hospital of Philadelphia Department of Social Work and Spiritual Care: http://www.chop.edu/centers-programs/social-work-and-spiritual-care/about

The LIV Foundation: http://www.thelivfoundation.org/

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The Hero Sherpa

There are times when we encounter people in this life that possess such grace and strength it is humbling.  We have had the good fortune of having many people of this character our life. Parents of children with life-altering illness often fit this make-up.

Often these parents don’t view themselves as heroes. They consider their child who is struggling with illness, pain and fear of the unknown at young ages the hero in their story.

Yet, they are indeed heroes.  They fight overwhelming odds, make significant sacrifices and help innocent children survive and thrive despite the condition or illness that is threatening their very existence. They guide Heroyoung souls along a treacherous journey.

It is these heroes that The LIV Foundation exists for.  When we come across resources that can help we share them with the intent of helping parents of children with life-altering illnesses live their lives well when on the journey of care with their sick child.

Recently we came across a blog called the Joyful Journey Mom. Jenni claims it started out as their adoption journal blog and over the last four years it has morphed into a blog about special needs, adoption and her life. Jenni and her husband have 6 children by birth and adoption. We have children with disabilities. The information Jenni has organized within her blog is amazing and can help families who need assistance.

Wish Organizations, Grants for Medical Equipment/Medical Assistance, Free Gifts and Services, even list of Free Places to Go and Some tips when applying for grants are all outlined in her post called, Ultimate List of Grants and Resources for Families with Special Needs.

If you are looking for ideas that can help you stay organized and effective while advocating for your child while on the journey of care there is even a blog post where Jenni describes How to make a personalized advocacy toolkit for your child.

This is such a great resource we simply had to share.  Please share with those heroes in your circle if you think it can help.

 

Tom Nieman is a Founder and President of The LIV Foundation and a financial services industry veteran. The best place to reach Tom is on LinkedIn at https://www.linkedin.com/in/tomnieman/ or email at tommynieman@gmail.com

If you want to learn more, need help or know someone who needs help check out the following resources:

The Children’s Hospital of Philadelphia Department of Social Work and Spiritual Care: http://www.chop.edu/centers-programs/social-work-and-spiritual-care/about

The LIV Foundation: http://www.thelivfoundation.org/

 

 

 

Thank You Veterans

Military families deserve to be revered for the sacrifices they make while serving our country. In times of war and peace their sacrifices are significant and innumerable.

When caring for a child and serving in the military, parents on the journey of care experience all of the challenges civilian parents on the same journey experience. You can read more about these challenges in our first blog post The Quiet Warrior Next Door.

However, many military veterans confront these challenges while managing through greater complexity and intensity. Deployments, pre-existing post-traumatic stress disorder, distance from family and other support due to service related relocations are just a few among a many other complications that can make the journey of care even more treacherous.

Veterans, thank you for your service!

If you, or someone you know is on the journey of care, know that there are some special resources available to veterans. Start by checking out Operation We Are Here. You will find some amazing resources there that can help you successfully navigate the journey you are on.

May God bless you and keep you.

 

About the author

Tom Nieman is a Founder and President of The LIV Foundation and a financial services industry veteran. The best place to reach Tom is on LinkedIn at https://www.linkedin.com/in/tomnieman/   or on email at tommynieman@gmail.com

If you want to learn more, need help or know someone who needs help check out the following resources:

The Children’s Hospital of Philadelphia Department of Social Work and Spiritual Care: http://www.chop.edu/centers-programs/social-work-and-spiritual-care/about

The LIV Foundation: http://www.thelivfoundation.org/

Operation We Are Here: http://www.operationwearehere.com/EFMP.html

Four Simple Ways (You Can Help…)

Many friends have asked how they can help with the work that the LIV Foundation has set out to do. The fact is that the opportunities are too innumerable to list them all. Remember our mission is to provide assistance for the families of children who live with life-altering illness so they can focus on living their lives and loving their children unconditionally. Meanwhile, many estimate about 15% to 18% of children in the United States live with a chronic health condition.

The mission is challenging but not overwhelming because we know that the families on the journey of care need help and are appreciative of any assistance, any act of kindness that can help their families.

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Here are the four simple ways you can help…

Number 1: Contribute to the LIV Beautifully @ CHOP Campaign. Help us help the CHOP Salon Services Team deliver some “Swag” over the holidays! You can do so by visiting us at http://www.thelivfoundation.org/events.html

 

Number 2: Like and share our blog and social media posts like this one. Therein we typically focus on providing information and resources intended to help families on the journey of care. This simple action may help a family in need connect with us.

 

Number 3: Check out the vendor links within our blog posts (Shop on Amazon and Help Families and Friends of CHOP).  If you shop at Amazon, Blue Apron and other online vendors you can help us by clicking on the links embedded in our blog posts.  We have established affiliate vendor agreements with several organizations and a small percentage of your purchase will go directly to the families that The LIV Foundation Serves. Alternatively, you can use AmazonSmile (https://smile.amazon.com/) is a website operated by Amazon with the same products, prices, and shopping features as Amazon.com. The difference is that when you shop on AmazonSmile, the AmazonSmile Foundation will donate 0.5% of the purchase price of eligible products to the charitable organization of your choice.

 

Number 4: If you or someone you know is on the journey of care, you would like to support our mission in some other way, or if you have questions reach out to us at thelivfoundation@gmail.com

 

Tom Nieman is a Founder and President of The LIV Foundation and a financial services industry veteran. The best place to reach Tom is on LinkedIn at https://www.linkedin.com/in/tomnieman/   or email at tommynieman@gmail.com

 

If you want to learn more, need help or know someone who needs help check out the following resources:

 

The Children’s Hospital of Philadelphia Department of Social Work and Spiritual Care: http://www.chop.edu/centers-programs/social-work-and-spiritual-care/about

The LIV Foundation: http://www.thelivfoundation.org/

15 Dos and Don’ts for Helping a Friend With a Sick Child in the Hospital https://www.huffingtonpost.com/dr-karin-l-smithson/conscious-relationships_b_4350876.html

How to Help a Friend Who’s Dealing With a Very Sick Child https://www.popsugar.com/moms/How-Help-Friend-Sick-Child-43084107

 

Chemo Related Hair Loss and the Proactivity Paradox

Per information published on the Mayo Clinic Web Site, chemotherapy may cause hair loss all over your body. In addition to hair loss on the scalp, sometimes eyelashes, eyebrows and other body hair also falls out. Some chemotherapy drugs are more likely than others to cause hair loss, and different doses can cause anything from a mere thinning to complete baldness. Hair is lost when chemotherapy drugs damage hair follicles, making hair fall out. According to the American Cancer Society, “it can be hard to predict which patients will lose their hair and which ones won’t, even when they take the same drugs.”

There are many Non-Oncology (Non-Cancer Related) conditions that can be treated by Chemotherapy including some Autoimmune Diseases and Inflammatory Conditions. Despite the severity and power of these drugs they often are prescribed in pediatric treatment regimen for childhood disease that can be treated effectively with Chemotherapy.  The symptoms are the similar to that which you will see in adults undergoing Chemotherapy including: Nausea, vomiting, and abdominal pain, muscle achiness, decreased appetite, decrease in blood cell counts, dizziness, darkened skin coloration, ringing in ears and hearing loss, kidney damage, rash and increased breathing effort, diarrhea or constipation, abdominal cramping, weakness, loss of reflexes and several other difficult symptoms. As you would imagine the difficulty of navigating these symptoms in children is, in many ways, more difficult than doing so with an adult patient.

Adding to the stress related to treatment is the impact of post treatment immunosuppression.  This occurs in chemotherapy patients and it makes them very susceptible to other ailments including colds, influenza, bronchitis and many others. Despite all of these complications, one of the least physically painful side effects, hair loss, can be among the most challenging to cope with.

In A Guide for Parents, Published by National Cancer Institute, it is suggested that it could be beneficial to take proactive steps to prepare for hair loss. Furthermore, if treatment is expected to cause a child’s hair to fall out, it may be helpful to let child pick out a fun cap, scarf, and/or wig ahead of time. Some have reported that it is best to pick out a wig before the hair falls out, so you can match it to their hair color. Sometimes cutting your child’s hair short before treatment helps make hair loss a bit less upsetting, in part because they have some control over the process and it happens all at once instead of falling out over a drawn out progression throughout the post treatment phase.

Shop on Amazon and Help Families and Friends of CHOP

For many patients undergoing treatment who experience hair loss, it is difficult to shake the cultural and personal attachment to their hair. However, in some cases it has been reported that the loss of hair, when dealt with in a positive, proactive manner can be an empowering event that buoys the patient’s spirit and conviction toward progress on the journey of care. In some cases the event can bolster a patient’s self-esteem by helping them realize the beauty they possess beyond the physical vessel of their body and all of its parts. Often the attachment we give to individual physical traits such as “beautiful flowing hair” can actually limit us and our self-image by depending too heavily on that one physical trait to bolster self-esteem. When such a gift is taken from us it can trigger a mourning period and even depression. Alternatively when given or shed proactively we can receive positive energy as a result of controlling an otherwise uncontrollable situation.

Tom Nieman is a Founder and President of The LIV Foundation and a financial services industry veteran. The best place to reach Tom is on LinkedIn at https://www.linkedin.com/in/tomnieman/ or email at tommynieman@gmail.com

If you want to learn more, need help or know someone who needs help check out the following resources:

The Children’s Hospital of Philadelphia Department of Social Work and Spiritual Care: http://www.chop.edu/centers-programs/social-work-and-spiritual-care/about

The LIV Foundation: http://www.thelivfoundation.org/

A Guide for Parents – National Cancer Institute: https://www.cancer.gov/publications/patient-education/children-with-cancer.pdf

CancerCare: https://www.cancercare.org/publications/287-hair_loss_during_treatment_finding_resources_and_support

The Power of Listening – One Thing You Can Do For A Family Who Has A Sick Child Even If You Have No Money, Resources or Extra Time

You may have lived through the gut wrenching experience of observing family or friends who have found themselves caring for a child with a life altering illness. Some say parents who go through the journey of care with their sick child, endure pain that rivals that of absorbing knockout blows from a heavyweight fighter.

First, there is the diagnosis, then overwhelming emotions accompanying the realization of the magnitude of the situation. Many parents develop post-traumatic stress disorder (PTSD), chronic anxiety and even depression. All too often the impact is devastating — health, financial and relational impacts are frequently astonishing.

There was a time, not too long ago, when several colleagues and friends were on the journey of care at the same time when we learned of a family member who was diagnosed with a genetic disorder that would require treatments over a prolonged period of time. Then, yet another friend learned that his young adult son needed treatment too.  The feeling of helplessness among many in our circle of friends and family, who watched with great hope of recovery and who longed for a return to how things were pre-diagnosis, was palpable.

The daily battle these parents endured from our vantage point was immense. Whether reporting to work at 8am on a Monday after a weekend of travel and treatments at a region hospital; driving home from a second job at 2am on a Saturday Morning to wake up and resume arguing with an insurance provider over an invoice; watching their young child endure the harshness of chemotherapy treatments; or any of the other hurdles on the gauntlet known as the journey of care; the trials are immensely strenuous in every dimension of life.

Shop on Amazon and Help Families and Friends of CHOP

The parents often serve as a source of inspiration for those around them but we, at times, were left with a feeling of helplessness due to our inability to support them in any meaningful way. Introspection, prayer and research all brought no answers commensurate with the challenge of adequately supporting these folks.  Then a trend emerged seemingly out of nowhere…  In a few instances it was mentioned that we wished we could do more to help and the parents expressed appreciation for how we took time to listen to them.

Yes the simple act of sincerely listening to them, letting them speak about anything they wished and just offering our time and attention made a difference for them. They felt heard as opposed to spoken to by experts. They felt cared for, with no strings attached, instead of directed and consulted. This still perplexes me but I am grateful to have been able to help. I certainly wish we could have done more at the time but am grateful to learn that seemingly all are able to help these people who desperately need to be heard.

They don’t need pity, solutions, suggestions or charity – like many among us they just need to be heard and feel as though they are understood. The simple act of listening, some reported, helped strengthen their resolve to carry on and continue to find ways to live their life and care for their child while on the often treacherous journey of care.

Tom Nieman is a Founder and President of The LIV Foundation and a financial services industry veteran. The best place to reach Tom is on LinkedIn at https://www.linkedin.com/in/tomnieman/ or email at tommynieman@gmail.com

If you want to learn more, need help or know someone who needs help check out the following resources:

The Children’s Hospital of Philadelphia Department of Social Work and Spiritual Care: http://www.chop.edu/centers-programs/social-work-and-spiritual-care/about

The LIV Foundation: http://www.thelivfoundation.org/

What To Say When a Friend’s Child Is Sick https://redefinedmom.com/what-to-say-when-a-friends-child-is-sick/

15 Dos and Don’ts for Helping a Friend With a Sick Child in the Hospital https://www.huffingtonpost.com/dr-karin-l-smithson/conscious-relationships_b_4350876.html

How to Help a Friend Who’s Dealing With a Very Sick Child  https://www.popsugar.com/moms/How-Help-Friend-Sick-Child-43084107

Money, Money, Money

Money or lack thereof, is not a barrier to finding therapy support for you and your family while caring for your family member who is chronically ill. Here are some ideas we found that may help you stretch your therapy treatment dollars…

Look for inexpensive options.

Counselors in training have to put in a minimum amount of treatment hours before earning their license, which means they sometimes offer sessions at a discount while being overseen by a licensed therapist. The same goes for students, supervised by a clinician,  at the master’s and Ph.D. level. Some report that after becoming licensed many counselors will keep their clients at a discounted rate as a form of loyalty.

Frequency and format are also places to get creative and have an impact on price. Instead of going every week, you can talk about going once a month, or switching your sessions to Skype and/or email. Today, online therapy services like BetterHelp, 7 Cups of Tea, BlahTherapy and Talkspace are reported to be effective and inexpensive alternatives for many. In many cases you can ask them to work on a payment plan.

Shop on Amazon and Help Families and Friends of CHOP

One frequently overlooked source for affordable assistance is your employer.  A growing number of employers offer Employee Assistance Programs (E.A.P.) benefits, which provide low cost or free, short-term care options for employees who need help from a trained psychologist, social worker or therapist when confronted with circumstances that create emotional stress.  If you are not sure whether your employer offers this type of benefit, ask your manager or your human resources contact.

The bottom line…

Self-care as a parent caring for a child with chronic or life-altering illness is a critical component of successfully navigating the journey of care. In our blog post from September 26th entitled Quiet Warrior Next Door: 5 things you may not know about your friend or family member who cares for a chronically ill child, Post-traumatic Stress Disorder (PTSD), burnout, marital strife, home and job loss were noted as frequent outcomes found in situations when families are on this journey. If you are on the journey of care there is no reason not to get help. The aid of a qualified, competent therapist can help you care for your family, remain productive at work and even help you take care of yourself — So you can in turn care more effectively for your family.

If you are new to the journey of care you may feel relieved to know that there are some very reasonably prices solutions you can fit into your budget. No matter how stretched you are financially you can find effective emotional support for you and your family.

In the next installment of this four part series we will summarize some of the key ideas we shared related to family therapy and support.

Tom Nieman is a Founder and President of The LIV Foundation and a financial services industry veteran. The best place to reach Tom is on LinkedIn at https://www.linkedin.com/in/tomnieman/ or email at tommynieman@gmail.com

If you want to learn more, need help or know someone who needs help check out the following resources:

The Children’s Hospital of Philadelphia Department of Social Work and Spiritual Care: http://www.chop.edu/centers-programs/social-work-and-spiritual-care/about

The LIV Foundation: http://www.thelivfoundation.org/

References used for this blog post:

https://www.psychologytoday.com/blog/freudian-sip/201102/how-find-the-best-therapist-you

http://www.apa.org/helpcenter/choose-therapist.aspx

https://www.webmd.com/mental-health/features/how-to-find-therapist#1

https://www.nytimes.com/2017/07/17/smarter-living/how-to-find-the-right-therapist.html?mcubz=3

https://www.thespruce.com/when-do-i-need-family-counselor-1270709