Tiffany's Lymphedema Fund

Tiffany Howe is a loving and devoted 38 year old mother of a beautiful and smart 12 year old daughter. For years, Tiffany has battled with Primary Congenital Lymphedema or Milroy’s Disease (see description below). Milroy’s Disease is not widely known, but it can take a serious toll, as evidenced in Tiffany’s life. Because of this disease, Tiffany cannot sit or stand for extended periods of time and so is no longer able to work as a psychiatric nurse. Tiffany desperately wants to continue to give her daughter a quality of life that she hasn’t enjoyed herself in the last 20 years. While she spends every day striving to do just that, I decided to seek help and support through GoFundMe in the hopes that Tiffany and her daughter would receive the blessings they deserve. NOTE: Pictures are included below which may be disturbing to some.

Tiffany needs financial assistance for two things:

1). She has seen countless doctors over the last 20 years, but none that have the expertise and experience needed to treat primary lymphedema. She has found specialized doctors at Johns Hopkins Hospital, but a visit would not be covered by her insurance. Due to non-coverage and her fixed income (disability), Tiffany needs financial assistance to help her cover out-of-pocket costs for a visit and hopefully treatment at Johns Hopkins Hospital.

2). The progression of this disease has caused Tiffany’s mobility to decline. She has a wheelchair, but does not have a vehicle to transport it, so she cannot use the wheelchair outside her home. As her leg gets larger and heavier, it has become almost impossible to get in and out of her current vehicle or to walk any distance. Tiffany needs assistance purchasing a wheelchair-accessible van.

Tiffany is determined to beat this disease. She does all she can to overcome it day by day. She wants to have what many of us enjoy: a decent quality of life; not just for her, but for her daughter. Tiffany wants to be able to experience and enjoy "life" with her daughter, and her daughter dreams about seeing her mom struggle and suffer less. Your help can get them closer to their dreams. Thank you for your consideration and generosity in helping them do that!

Her Story:

In 1998, before Tiffany was correctly diagnosed with lymphedema, doctors performed liposuction on her leg to reduce the fluid and swelling. The surgery was unsuccessful and caused more swelling.

In 2005, Tiffany suffered an infection which made her unable to walk due to the pain. She was hospitalized one or more days every week, and eventually had to resign from her job as a psychiatric nurse.

In 2006, Tiffany was given the choice to undergo "debulking" with the Charles' Procedure or have her leg amputated. She opted for the surgery which included grafting on the left leg from the knee to the ankle resulting in permanent nerve damaged, increased scar tissue causing more lymphatic damage, and the inability to wear socks or shoes on that foot, because of increased swelling.

From 2012 to the present, the swelling alleviated from the debulking moved to her foot and thigh and she began suffering from multiple blood clots. In the last year, Tiffany has been hospitalized over nine times with cellulitis. The last hospitalization this past July, was because the cellulitis turned into a sepsis infection.

Primary Congenital Lymphedema:

-Fluid accumulation in the tissues due to an insufficiency in the lymphatic system causing swelling in the extremities, and in rare cases like mine; in the face, neck, abdomen, and genitals

-Afflicts approximately 1% of the United States population, the cause is unknown, and it is poorly understood in the medical community

-First appears at birth, reaches onset around puberty, and peaks by the age of 35

-Progressive, physically deforming, and life-altering

-Three stages of lymphedema, and I have stage three Lymphostatic Elephantiasis which is excessive tissue volume, hardening of the dermal tissues, hyperparakeratosis (oral lesions), and papillomas (tumors) of the skin

-Related illnesses are cellulites (infection of the deep subcutaneous tissue of the skin), erysipelas (acute streptococcus bacterial infection of the skin), and lymphangitis (bacterial infection in the lymphatic vessels)