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Tips For A Factor IX Who Travels For Work?

A MyHaemophiliaTeam Member asked a question πŸ’­
Gulfport, MS

I have factor IX hemophilia. I graduate college on May 12th, 2017 and have a job which will put me on tour with a nationally touring band. What are some tips if you have any that could help? How to get more factor when I'm on the road, contacts I should have, how to get more equipment (needles, syringes, etc) if I need more, etc.
I only take factor on demand, so I don't run out quickly. Don't really see this being an issue, but any information and tips will be helpful.

May 2, 2017 (edited)
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A MyHaemophiliaTeam Member

I am also Factor IX deficient and do alot of traveling, including work related prior to recently retiring.

I always carried 2 doses with me and kept close contact with my base hemophilia doctor throughout the last 10+ years.

Also on demand, I've had many out of state events. Keep your benefix current (not expired) Noone will administer for you if it's expired and they don't have any in stock. The supplies (needles, Turnicut, etc) will be supplied with your benefix if you let them know.

My base hemophilia team will search out ERs, Hospitals that have benefix on hand and call ahead my arrival.

Just don't get lax on the process as that is when the demand will arise.

Cate

March 11, 2023
A MyHaemophiliaTeam Member

Your supplying specialty pharmacy should have a special representative for hemophilia treatment product. Get in touch with them and develop a relationship with regular check-ins. They should be able to overnight ship anywhere in the country. You can have product and supplies sent to FedEx office locations for you to pick up while you are on the road.

October 8, 2022
A MyHaemophiliaTeam Member

Depending on where you are from makes everything easier. The doctor I go through has an employee whose job is to make sure the patient has the factor they need when they need it. Ask your doctor about it. They should be able to direct you to someone.

May 30, 2017

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