Patient Support Intake Form - Lymphangiomatosis & Gorham's Disease Alliance

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Patient Support Intake Form

Today's Date
PLEASE TELL US ABOUT THE PATIENT
Name*
First Last
Date of Birth*
MM
DD
YYYY
Gender*
- Male
- Female
Address*
Street Address Address Line 2 City State / Province / Region ZIP / Postal Code Country
Phone
Email*
What is the patient's diagnosis?*
- lymphangiomatosis
- Gorham's Disease
- Lymphatic Malformation
- Other or not sure
If you answered other/not sure to the above question, please enter the diagnosis given by your physician in the space below:*
How old was the patient when diagnosed?*
What areas of the patient's body are effected? Check all that apply:*
- Chest
- Abdomen
- Bones
- Skin
What part of the chest is involved? Check all that apply.*
- Heart
- Lung(s)
- Thyroid
- Thoracic Duct
What part of the abdomen is involved? Check all that apply:*
- Liver
- Spleen
- Kidney(s)
- Intestines
- Gallbladder
Which bones are involved? Check all that apply.*
- Skull
- Ribs
- Spine
- Pelvis
- Shoulder
- Arm(s)
- Leg(s)
What symptoms have been experienced? Check all that apply.*
- Pain
- Fluid Collection(s)
- Fracture
- Cough/wheezing/difficulty breathing
- Severe fatigue (patient unable to attend school/work/activities at least once a week)
- slow growth/malnourishment
- Fever not associated with acute illness
- Frequent infection
- Nausea/Vomiting
- Diarrhea
- Rash
- None of the above
Where is the patient's pain located? Check all that apply.*
- Bone(s)
- Chest
- Abdomen
- Head
Where/what type of fluid collections does the patient have? Check all that apply.*
- Lungs/pleural effusions
- Heart/pericardial effusions
- Abdomen
- Arms/Legs
What bone(s) have been fractured?*
How are the breathing symptoms managed? Check all that apply.*
- Inhalers
- Breathing Treatments
- Medication
- Oxygen
- None of the above
What symptom(s) did the patient experience first?*
Enter "none" if no symptoms were noticed before diagnosis.
How long did the patient experience symptoms before being diagnosed?*
please select from the drop-down menu
How many doctors did the patient see before being diagnosed?*
please select from the drop-down menu
What tests has the patient had to diagnose and follow the disease? Check all that apply.*
- X-ray
- CT scan
- MRI
- Biopsy
- Bone Scan
- Lymphangiogram/lymphoscintigraphy
- DNA Testing
What medications/treatments has the patient had? Check all that apply.*
- Interferon/Intron A
- Octreotide
- sirolimus/Rapamicin/Rapamune
- Pamidronate/Aredia
- Fosamax/alendronate
- Zometa/Reclast/zoledronic acid
- vincristin
- Thalidomide
- draw fluid from around heart/lungs (pericardiocentesis/pleurocentesis)
- permanent drain/shunt
- sclerotherapy
- drain fluid from abdomen (pleurodesis)
- radiation therapy
- Total Parenteral Nutrition (TPN)
- Medium Chain Triglyceride oil (MCT oil)
- Low Fat/No Fat diet
- Bone Surgery
- other surgery
- Patient has NOT taken any medications or had any treatments
- Other/Not Listed
If you checked "Other/Not Listed" above, please list medications and/or treatments the patient has had.*
Do you feel that any of these interventions was effective?*
- YES
- NO
- Have not had any treatment
Which intervention(s) do you feel have been effective?*
Does the patient have any disabilities related to the diagnosis?*
- YES
- NO
What is the nature of the disability?*
Does the patient have any chronic or congenital diagnoses?*
- YES
- NO
EX: congenital heart disease, diabetes, asthma, genetic conditions like Down syndrome, neurological disorders
Please list the other conditions with which the patient has been diagnosed.*
INFORMATION ABOUT THE PATIENT'S CARE
Who provides and where the patient receives care related to lymphangiomatosis or Gorham's disease
What is the name of the patient's main doctor for lymphangiomatosis/Gorham's disease?
What is this doctor's area of specialty?*
please select from the drop-down menu
Please enter the name of the clinic/hospital where the patient receives most of his/her care for lymphangiomatosis/Gorham's*
Please include the city and state where this facility is located.
How far is this facility from where the patient lives?*
please select from the drop-down menu
How often does the patient travel to this facility?*
Please select from the drop-down menu
ABOUT THE PERSON COMPLETING THE FORM
I am the:*
- Patient
- Parent or Legal Guardian with whom the patient resides
- Parent or Guardian with whom the patient does NOT reside
- Spouse of the patient
- Patient's physician or nurse
- other
Name of person completing form*
First Last
What is your relationship to the patient and why are you completing this form?*
Is patient living?*
- YES
- NO
When did the patient die?*
What was the cause of death?*
Address of person completing form*
Street Address Address Line 2 City State / Province / Region ZIP / Postal Code Country
Email of person completing form*
Phone for person completing form*
As part of our patient support program LGDA tries to match interested patients and families who share common experiences, live in the same regions, and/or receive medical care from the same physicians and facilities. We also match those who have lost loved ones to these diseases. The program is strictly voluntary and you may opt in or out at any time by sending an email to our Director of Patient Support at support@LGDAlliance.org.
Do you wish to participate in LGDA's Patient Matching Program?*
- YES
- Not at this time
Submission of this completed form constitutes understanding of its purpose and use by the LGD Alliance and its professional partners, as described on this website on the preceding page.

Reach for a Cure

Register a patient in the International LGDA Registry for Lymphatic Malformations. Help researchers worldwide unlock the mysteries of lymphangiomatosis and Gorham's disease to find a treatment and a cure!

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LGDA is here to help you find resources and to provide support to patients and families living with Gorham-Stout disease (GSD) & lymphangiomatosis/generalized lymphatic anomaly (GLA).

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19919 Villa Lante Place
Boca Raton, FL 33434
Phone: (844) 588-5771 (toll free)

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