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Hodgkin’s International

Supporting Long-Term survivors through connection, education, and advocacy

Hodgkin’s International is a non-profit (501.c3) organization founded in 2017

Our vision is simple. it is-

“To improve the quality of life for long-term Hodgkin Lymphoma survivors, where ever they may be.”

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You are not alone!

Like many of you, we have been desperate for information- information that was sometimes hard to find, even from our health care providers. Cancer survivorship is still a relatively new field, and for “good” reasons. When we were treated for Hodgkin’s years and years ago, the survival rate was much lower than it is today. The primary goal of medicine decades earlier was to CURE cancer, period. The long-term effects of radiation and chemotherapy are only now being understood.

Far too many Hodgkin’s survivors have discovered that they are at risk for serious health issues AFTER they began to have symptoms. Worse, they often have to convince their doctors that their symptoms are real.

This website is designed to give Hodgkin Lymphoma survivors up-to-date information about anything and everything related to survivorship. You will find stories from other survivors, all who have “been there, done that” in “Survivor Voices” on our “Resources” page. On the same page, you can view a bibliography of scholarly, clinical articles about long-term effects under “Articles/Research Papers on Late Effects.” There are a number of helpful hints, blogs, and suggested readings in the “News Feed” section of Resources. All of these can be reached by clicking the tabs at the top of our Home Page.

We will be adding new topics every month to our Home Page, and we invite you to share your own thoughts, ideas, concerns, and questions. (If we can’t find an answer, we’ll find someone who CAN!)

Thanks for visiting, and welcome!

 

Sophia Kustas Smith, Board Member, Hodgkin’s International- speaking at ASCO Annual Meeting 2018

Sophia Kustas Smith, Board Member, Hodgkin’s International- speaking at ASCO Annual Meeting 2018

Heidi Lynn Blatt-Poakeart, celebrating 29 years of survival!

Heidi Lynn Blatt-Poakeart, celebrating 29 years of survival!

Late effects of earlier treatment for Hodgkin’s- the basics

Long-term survivors of Hodgkin Lymphoma may face serious health issues as a consequence of earlier treatment modalities, particularly older forms of radiation and chemotherapy. Here are some of the late effects we need to be concerned with:

Heart Disease

Lung Disease

Thyroid Disease

Secondary Cancers: Breast Cancer, Lung Cancer, Leukemia, Non-Hodgkin’s Lymphoma, Thyroid Cancer, Esophageal Cancer, Skin Cancer, and others

Radiation Fibrosis (RF): where normally healthy tissue becomes “sclerotic,” or hard and stiff

Pelvic Radiation Disease (PRD): for those survivors who received radiation therapy to their pelvic region

Debilitating Fatigue

Compromised Immune System: especially for those without a spleen

Infertility

Depression

These are just a few of the possible late effects that survivors might expect. Older forms of radiation and chemotherapy are now known to have toxic, sometimes life-threatening consequences. Hodgkin’s International is committed to providing education and support to survivors who may be dealing with these problems. For more detailed information, including clinical research articles, blogs from fellow survivors, suggested reading materials and links to other support services, please navigate to the “Resources” page above.

Let us know what we can do to help YOU. Email us at erincummings@hodgkinsinternational.org.

MARCH, 2019 TOPIC-

“The Disability Dilemma: Difficult Decisions for Long-Term Survivors”

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There’s good news and bad news on the survivorship front- always. Whether it’s struggling with the ongoing effects from treatment or celebrating another milestone, long-term Hodgkin’s survivors have learned the hard way that being a survivor comes with a cost. It may be a physical, emotional, or financial one, but eventually, there will be a price to pay for being pronounced “cured.”

Here’s the good news: we ARE living longer than expected. We are doing things that we never thought possible: going to school, having careers, having families, living long enough to contemplate things like “retirement.” For many of us, however, this has been a VERY bumpy road. It has been fraught with never-ending health battles and a near constant state of uncertainty. When we can work, how long we can work, whether or not we have medical insurance that covers all of our costs- these are just a few of the questions that survivors must deal with. The financial consequences of secondary effects of cancer may be beyond challenging for some- they may be devastating.

Throughout the month of March, we will be highlighting issues relating to employment, disability, and insurance for long-term survivors. We will include the perspective of those who live in other countries, not just the United States. This is NOT an easy subject to tackle, and our hope is to do it in a way that is respectful to all. We will be posting research studies, articles, as well as personal stories on our Facebook Page. We hope you will join us, adding your own story, thoughts, etc. so that we have a diverse representation of the experiences of our community.

Find us on Facebook (link at the bottom of this page), and add your voice to the discussion. We’d love to hear from you!