Moving from the UK to sarasota Florida

[Suzie]

Hi everyone

My name is susan and we have just found out our 7mth old son has cf. We also have a little girl wocf she is 3. We were making plans to move to the states in oct but then our world fell apart....
I am in desperate need of knowing about the management of cf over in the states as my family would still love to follow our dream and move this year. People back here say the uk are more advanced in gene therapy and that the us management is not as good. I don't believe this as the us is usually the leaders in most things. Please could someone inform me on the daily treatment and routine for pwcf especially babies so I can confirm that we are still making the right decision. we have already brought our house and we would be so upset to change them Thank you buddies XXXXX

 

[Suzie]

Hi everyone

My name is susan and we have just found out our 7mth old son has cf. We also have a little girl wocf she is 3. We were making plans to move to the states in oct but then our world fell apart....
I am in desperate need of knowing about the management of cf over in the states as my family would still love to follow our dream and move this year. People back here say the uk are more advanced in gene therapy and that the us management is not as good. I don't believe this as the us is usually the leaders in most things. Please could someone inform me on the daily treatment and routine for pwcf especially babies so I can confirm that we are still making the right decision. we have already brought our house and we would be so upset to change them Thank you buddies XXXXX

 

[2005CFmom]

I don't know what country offers better managment of CF. I do know that in the US we don't have national health care... so you will need to be covered by an employers plan or you will need to pay for things out of your own pocket. Also, depending on the plan, there may be a waiting period before CF related expenses. You will need to find about pre-existing conditions included in the plan.

But to answer your question about daily treatment... my daughter takes enzymes and vitamins, we do 2 - 3 nebulizers treatment of albuterol, 1 pulmozyme treatment, and 2-3 chest clearance (CPT, Acapela) treatments per day.

Her CF is very mild at this time and I believe that this is the basic treatment for most children with CF. As the condition worsens other medications are often added.

I hope this helped.

 

[2005CFmom]

I don't know what country offers better managment of CF. I do know that in the US we don't have national health care... so you will need to be covered by an employers plan or you will need to pay for things out of your own pocket. Also, depending on the plan, there may be a waiting period before CF related expenses. You will need to find about pre-existing conditions included in the plan.

But to answer your question about daily treatment... my daughter takes enzymes and vitamins, we do 2 - 3 nebulizers treatment of albuterol, 1 pulmozyme treatment, and 2-3 chest clearance (CPT, Acapela) treatments per day.

Her CF is very mild at this time and I believe that this is the basic treatment for most children with CF. As the condition worsens other medications are often added.

I hope this helped.

 

[JazzysMom]

I think there are 2 main obstacles U will encounter as far as treatment here in the U.S. First one being each doctor handles things slightly different so what meds/treatments/aggressiveness one patient has doesnt mean applies to another if they use a different doctor. The second is the cost of EVERYTHING. The meds are VERY expensive. Although there is help avaiable for some of it thru the drug companies & maybe state assistance, it is a BIG issue for you to consider. Being from another country might slow the process down for help. I dont know.....I am guessing. Either way U cant fly into America, go to the local pharmacy & get the meds & start your life as I am sure U are aware of. I would start by contacting the nearest CF center near where U plan on moving to & speaking with their social worker. Explain what your plans are, see if they are taking new patients & what programs they can direct U towards!

 

[JazzysMom]

I think there are 2 main obstacles U will encounter as far as treatment here in the U.S. First one being each doctor handles things slightly different so what meds/treatments/aggressiveness one patient has doesnt mean applies to another if they use a different doctor. The second is the cost of EVERYTHING. The meds are VERY expensive. Although there is help avaiable for some of it thru the drug companies & maybe state assistance, it is a BIG issue for you to consider. Being from another country might slow the process down for help. I dont know.....I am guessing. Either way U cant fly into America, go to the local pharmacy & get the meds & start your life as I am sure U are aware of. I would start by contacting the nearest CF center near where U plan on moving to & speaking with their social worker. Explain what your plans are, see if they are taking new patients & what programs they can direct U towards!

 

[miesl]

You NEED private insurance.

Are you going to have a job before you come that will offer health insurance for your family?

If not - I strongly recommend that you look into the costs you will have to pay out of pocket for your child's clinic visits, potential hospital stays, and medication. It's prohibitively expensive if you aren't going to qualify for government aid (I don't know much about said qualifications - you'll have to ask around).

 

[miesl]

You NEED private insurance.

Are you going to have a job before you come that will offer health insurance for your family?

If not - I strongly recommend that you look into the costs you will have to pay out of pocket for your child's clinic visits, potential hospital stays, and medication. It's prohibitively expensive if you aren't going to qualify for government aid (I don't know much about said qualifications - you'll have to ask around).

 

[Englishman]

Hi Susan,

We have just been to Florida for our third time and have actually discussed whether we would move over if i had a job. I am very interseted in knowing about the care, cost and how to go about moving, if you would be so kind to post your findings.

Thank You and Good Luck

Englishman with Daughter WCF

 

[Englishman]

Hi Susan,

We have just been to Florida for our third time and have actually discussed whether we would move over if i had a job. I am very interseted in knowing about the care, cost and how to go about moving, if you would be so kind to post your findings.

Thank You and Good Luck

Englishman with Daughter WCF