The Hemophilia Community Supports Us After Hurricane Ian

Offers of housing, medication help make a difference for evacuees from disaster

Jennifer Lynne avatar

by Jennifer Lynne |

Share this article:

Share article via email
banner image for

Greetings! I’m writing from Orlando, Florida, my temporary oasis from the wrath of Hurricane Ian. Last week, my mom and I evacuated to this inland city from Punta Gorda, on the coast in the southwest part of the state. Staying was not an option as my mom is oxygen-dependent and has an immune deficiency. Astonishing weather-related news: My home has been in the eye of a hurricane not once but twice, with Hurricane Charley in 2004 and now Hurricane Ian on Sept. 28.

I’m usually not at a loss for words, but Ian has turned my mind to mush. Some days I have difficulty formulating a sentence, and I struggle to focus on the most menial tasks. The fate of others affected by Ian saddens me. Some lost their lives. Many lost their homes and source of income. Yesterday, as I write this, I cried in the elevator. Normalcy for everyone in southwest Florida has been upended.

The hemophilia community has been amazingly supportive. Members have offered us a place to stay. The nurse from my hemophilia treatment center in Tampa was one of the first to contact me to ensure I was OK. I was told the Florida Hemophilia Association would help pay for my factor medication to treat my hemophilia B or von Willebrand disease if I needed help.

The kindness of strangers has prevailed over these dark days. I’ve received countless offers from family and friends to provide us with housing. I’m grateful to Orlando’s Rosen Shingle Creek Hotel for offering a deep discount to hurricane evacuees. And to the person who left a bag of groceries in the hotel’s laundry room with a kind note, you’re beyond cool.

Recommended Reading
The double helix of a DNA strand is shown.

Phase 3 Trial of SB-525, Gene Therapy for Hem A, Again Enrolling

Hurricane Ian

“Hide from the wind — run from the water” is a mantra for hurricane survival. When Ian came barreling into southwest Florida, my hometown experienced massive destruction from deadly winds and torrential rain. The post office, pharmacies, grocery stores, and hospitals are all damaged. Unlike Fort Myers, our neighbor to the south, we were spared the deadly storm surge.

As I write this, local officials haven’t said it’s safe to return, and in fact have encouraged people to stay away. A curfew is in place. As a result, we haven’t made the trip to Punta Gorda from Orlando to survey the damage. We’re on an “evacuation vacation,” a phrase I made up earlier today.

Punta Gorda still doesn’t have reliable cellphone reception or internet, and it lacks basic services and essentials like water and gasoline. The power returned Oct. 4, but is in “low mode.” Damage to the county’s water system means a boil advisory is in place. One of my friends describes brown water flowing from her faucets and sewage seeping into her condo.

After Hurricane Charley damaged our condo in 2004, we installed bulletproof hurricane shutters. When they’re down, the condo is like a fortress. Without the shutters, our home no doubt would’ve had extensive damage. Based on the observation of neighbors, I’m hoping our damage is mainly on the lanai, outside of the hurricane shutters, but we’re not sure yet.

Even with shutters, my neighbors who stayed have uniformly wished they’d evacuated. They say Ian was far worse than Charley because it lasted far longer. They, too, are struggling with sadness.

Sanibel Island, Fort Myers Beach, and Pine Island are special destinations full of beauty and the rich history of old Florida. They are forever changed.

We’ll get through this one day at a time.


Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.

Comments

Leave a comment

Fill in the required fields to post. Your email address will not be published.