Teresa'Lymphedema/Sjogren's Fund

My name is Teresa H. Barbosa, I am 52 years old. 6 years ago my life changed completely. I have always been very active, I raised my son on my own, worked 2,3 jobs, I have never been in any government welfare program.  Asking for help, has never been easy for me. I am now asking.

 Years ago I notice that my right foot, right ankle, and right leg were getting worse. I was also developing swelling on my right index finger, and swelling on my thigh, and chest, all on my right side. I always had some swelling on my right ankle, and I also knew that when I was five I had developed swelling on my right leg, and face. Back then, and leaving in Africa, no one could come up with a diagnosis. For 5 years I was on a low protein diet, and it seemed to disappeared, at least the swelling in my face and leg was gone. My foot and ankle was always a bit swollen but not alarming.

So, I continue to go on, got married, had my son, got divorced, worked, never felt limited; I enjoyed my garden, my backyard. I exercised; I did yoga, and loved to dance.

Then 6 years ago, my toes and right foot began to swell up more and more, so did my leg, my hip, torso area, and chest, my fingers, and my face: all in my right side. At the same time, I began feeling dryness in my mouth, nose and eyes. Bleeding nose became common; I could no longer use contact lenses.  I started to have problems with my teeth and my gums; I also started having joints pain, my hands started not to work as before.

Walking became a “pain”, cooking became a pain, washing dishes become a pain . Everything that I enjoyed doing, became more and more difficult to do. When standing to cook or wash dishes, my foot, leg, would become more swollen, and painful. But sitting was no better either. Exercising became painful. So was gardening, and everything else I enjoyed. I could no longer work 7 days a week as I had been doing for many years to help my son as I had planned.

I work at a hospital, and one would think it would be easy to find an answer. Not so. Many doctors seen, many tests done until one doctor said: you have primary Lymphedema. Primary what? I never heard about Primary lymphedema. And the joint pain and mouth, eye and skin dryness was diagnosed as Sjögren's Disease. Sjögren's what? I had never heard of Sjögren's.

So, what is Primary Lymphedema?

Lymphedema is an abnormal collection of high-protein fluid just beneath the skin. This swelling, or edema, occurs most commonly in the arm or leg, but it also may occur in other parts of the body including the breast or trunk, head and neck, or genitals.  When the collection of protein-rich fluid persists in a specific area, it can attract more fluid and thus worsen the swelling. In addition to increased fluid in the area, the body experiences an inflammatory reaction resulting in scar tissue called fibrosis in the affected area. The presence of fibrosis makes it even more difficult for the excess fluid to be eliminated from the area. (http://lymphnet.org/le-faqs/what-is-lymphedema)

At this time, I am at what is called Stage 2 Lymphedema

In Stage 2 lymphedema, the swelling takes on a spongy consistency and “pitting” is less present. This tissue consistency change is caused by the formation of fibrosis, or scar tissue, with gradual thickening of the tissues on the limb as it increases in size.
Stage 3 Lymphedema:
At this stage, the skin typically becomes very dry and scaly and the limb or other affected body region becomes very large. There may be fluid leaking from the limb and skin infections are common.

And What is Sjögren's?

Sjögren's is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies and lymphomas. Sjögren’s also cause dysfunction of organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Patients also have a higher risk of developing lymphoma.  (http://www.sjogrens.org/home/about-sjogrens)

So, my life changed in a blink of an eye. I feel I live in two different bodies. One that fit clothes and shoe in one size and the other in completely different size.  Buying shoes and clothes became a problem. I have now difficulty fitting into clothing in one specific area; I no longer wear ring, wristwatch, bracelet due to swelling and tightness. I have decreased flexibility in my hand, wrist, foot and ankle on my right side. My face is swollen. I use Pneumatic compression devices for in-home management of lymphedema during the day; at night I use a leg garment to keep the swelling down. I also see a MLD (Manual lymphatic drainage) Therapist. I have to be seen by my doctors every 3 months.   

And Sjögren’s has taken over. I have developed gum and teeth problems. I have to go to dentist every three month. I have to buy products and medications for dryness and pain. Every 6 months I have to have Rituximab infusion, which takes 6 to 7 hours.

Basically, these diseases not only have taken over my body, but also my bank account. The expenses have been more than I can handle. Many of the meds and compression devices are not covered by insurance. Little is cover by Dental. Co-pay for therapies, for medical appointments…

I am still working, and intend to work until I can no longer do so. I keep pushing myself, and will not give in to these diseases. I live in Rhode Island and work in Boston. And now I have to drive in to Boston. More expenses with driving, parking and so on. Unfortunately, the hospital that I work  for does not have accommodations for someone who is considered “disable”; therefore, I have to park outside the hospital premises, which is more affordable. I cannot pay 99 dollars a week to park at the hospital….

The money I raise here will go to get treatment that I need for these two debilitating diseases, and to help me pay for the debts I accrued this past 6 years,
 and help me continue to fight and have a better quality of life, and more important not to become totally disable and become a burden to my son, who is just starting his adult life

Thank you so much for your kind donation, this would absolutely mean the world to me and my son.
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Teresa Barbosa 
Pawtucket, RI
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