Voices Across America

My Patient Story

Jenn

State: Massachusetts
Congressional District: MA06

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Diseases

Rare Disease

Issues and Challenges

Jenn has encountered: Rare / Underserved Disease, Geography, Medical Discrimination

My Story

https://www.massbio.org/news/recent-news/not-worth-less/

In a nutshell, we fought for 6 years for a drug approval for duchenne MD, and now, I have exhausted all avenues for Max to receive masshealth coverage of either of his only two approved therapies, Exondys51 and Emflaza.

My Motivation and Inspiration

My 4 children. Austin 21, Max 18, James 13 and Norah 9, and all others who live with or love someone with a rare disease.

Austin and Max live with duchenne, James lives with congenital cholesteatoma and primary immune deficiency.

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Young Lupus Patients Need a Voice Too

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Dire Need for Trauma Awareness in Providers

X-Linked Hypophosphatemia and Copay Accumulators

Step therapy and Crowning Lupus

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Mitochondrial disease led me to create Rare New England

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Trying to empower and educate others like myself

The long road to acceptance

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Gaslighting Mental/Emotional Health

My Autoimmune Diseases and disappointment in Western medicine

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Familial Adenomatous Polyposis – my life as a polyp

Lynch Syndrome, colon cancer, but still alive and kicking

Step therapy interfered with my bone loss treatment

Fibromyalgia stole my Olympic dream

Duchenne Muscular Dystrophy – fighting for what’s right

More than one diagnosis at a time – Looms4Lupus

The argument for more research funding for migraine disease

Psoriasis and what made me an advocate

For the 60 million Americans with allergies and asthma

PIVOT and life after cancer

Congenital Diaphragmatic Hernia and Shane

For John – putting patients at the heart of research

Intravenous Immunoglobulin for life – a good life

PKU, still a long way to go

From Juvenile RA to adult RA – the many obstacles to care

Providers keep delaying my need for pain relief

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Discrimination against me for my chronic pain

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Ignored and dismissed in the ER

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Step Therapy wasted a year of my life

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Racial discrimination in my migraine care

A legacy in wood work

Multiple Myeloma helped refine my voice as an advocate

COPD and how it led me to Advocacy

Carrying the cost of MoyaMoya Disease

Epidermolysis Bullosa and why I advocate

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Depression: Setting an example for my kids

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Forced off a working therapy

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It’s…frustrating. I’ve now got to pay large bills myself

6 years fighting for a drug approval for duchenne MD

Knowing that there is someone battling the system for me

Helping make a change for other diabetics

Advocate for those suffering with PMDD

I Fight for My Dad

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