Advice of Birt-Hogg-Dubé syndrome

More awareness is making things happen

by Kathy

support from my family

by Kerrie chrimes

Staying Positive......choosing to see the glass half full rather then half empty.

by Fellow BHDer

By NOT freaking out over the diagnosis. I did a bit at 1st, but my brother who does not have BHD, does have unstable diabeties ( he was always athletic, never a pound over weight got this when he was about 28, and has had a truly awful time with this. No

by Lee

Prayer

by Dennis Jeske

a proper diagnosis

by Wilma Erickson

learning more about the disease to understand the stats involved in the different symptoms

by BillD

!st Collapsed lung happened Oct 1985, another April 1986, with surgery; another surgery Jul 1986; 4th surgery Oct 1986; followed by a c-section Feb 1987. Without the surgeon in Utah at that time, I wouldn't have survived. We were living in Las Vegas at th

by candy

Better drugs are being discovered

by Kathy

being diagnosed now allows for proper screening that gives me hope

by Kerrie chrimes

Finding Support. There is comfort in knowing your not alone. sometimes no matter how bad our situation you may find others dealing with the same condition but worse circumstances than you. Than comes a moment of thankfulness.....

by Fellow BHDer

I need to be strong for my kids

by Lee

A good dr.

by Dennis Jeske

Good diet and exercise

by Wilma Erickson

understanding the BHD tends to cluster with groups showing lung & skin symptoms or kidney & skin but not both

by BillD

No doubt having the lower right lobe being removed and sections of left also; I wasn't diagnosed w/BHD until 2013 & lung doc at that time confirmed thur blood test.

by candy

Knowing i am not alone and there are others like me

by Kathy

my faith in God

by Kerrie chrimes

Inform yourself...Knowledge is everything. Be aware of your limitations and live your life to th full with what you have. Not with what you dont. Best sources of information for bhd are bhdsyndrome.org and https://rarediseases.info.nih.gov/

by Fellow BHDer

I truly believe there are way worse things to have !!!

by Lee

More prayer

by Dennis Jeske

Having good medical professionals follow me

by Wilma Erickson

going through it with siblings...having a great genetic counselor

by BillD

several other family members have been diagnosed include 2 sisters; 2 daughters; about 9+ cousins. I'm now on oxygen. 2 cousins had kidney cancer and several also have had lung collapse. Still learning about BHD

by candy