- C
- B
The hardest thing for my wife to do is ask for money. She has struggled with her independence over the last four years. The digression started in early 2008, with the last four years being the hardest. With Anna's conditions getting worse and her symptoms more frequent, I have seen her give up many joys in life. She does her best to put a positive spin on her conditions, but sadly they're degenerative and will only get worse. We have applied for government disability (CPP), but have been denied each time.
Here is Anna's story:
In March of 2008, she was diagnosed with Thyroid Cancer. Because the cancer was very advanced, she went into major surgery within a few weeks. What was originally thought to be a 3 hour procedure wound up taking close to 6 hours. Upon completion, she had her thyroid and her parathyroid removed, as well as 29 other pieces of her neck that tested positive for metastatic papillary carcinoma (Cancer).
Although the surgery was deemed successful, the trauma that her body experienced awakened dormant genetic monsters. As rare syndromes and disorders, it took almost two years of testing with many different doctors and specialists in Victoria and Vancouver to start deciphering some of the puzzle.
For starters, she was diagnosed with EDS and POTS. Let me explain:
Ehlers-Danlos Syndrome (EDS):
- an inherited connective tissue disorder.
- EDS is caused by a defect in the structure, production, or processing of collagen or proteins.
- Collagen is an important contributor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs; abnormal collagen renders these structures more elastic. In some cases, the severity of the mutation can be life-threatening.
- EDS is a chronic pain disease, with patients suffering daily.
- The hypermobility type of EDS sometimes co-occurs with POTS. This type of EDS is characterized by loose, clicking joints prone to subluxations and dislocations.
- Because one can 'appear' healthy despite EDS, it is considered an invisible disability.
Postural Orthostatic Tachycardia Syndrome (POTS):
- a condition in which a change from the supine position to an upright position causes an abnormally increase the heart rate.
- symptoms include palpitations, light-headedness, chest discomfort, shortness of breath, weakness, blurred vision, fainting, migraine-like headaches.
- the causes of POTS are poorly understood.
The diagnosis of EDS and POTS seemed to answer a few of the questions, but some queries were left unresolved. As time passed, more issues presented themselves and the plot thickened. No one could explain the rashes and hives that her skin would periodically exhibited.
More medical tests were given, skin biopsies cut-out, and plenty of time spent waiting to see specialists from various fields ultimately get stumped. Eventually after what seemed like another year or two, an allergist/immunologist diagnosed her as having 'borderline' Mastocytosis.
Mastocytosis:
- a rare mast cell activation disorder.
- People affected by Mastocytosis are susceptible to itching, hives, and anaphylactic shock, caused by the release of histamine from mast cells.
- There is currently no cure for Mastocytosis.
- a 'low-histamine- diet helps treat the symptoms.
Due to the Mastocytosis Anna is on a 'low histamine diet', and is in need of air purifiers and allergy medication. These medications as well as her post-cancer surgery medications, and the 'low histamine diet' shopping list are quite costly.
Another concern with Anna having all of these 'things' is that she can not take the usual medications and pain-relievers. She is either allergic or negatively affected by their adverse side-affects. It's not uncommon for her to be in the hospital, only to have things made worse by an attending physician trying something new.
These incurable conditions leave her on her own trying to manage the pain and somehow find comfort. She has some braces for various parts of her body to help keep her joints in place. We currently own knee, ankle, wrist, shoulder and neck braces, as well as wedge pillows. The ankle, shoulder and neck braces were custom-made at quite a hefty cost. We're looking at having some knee and finger braces custom-made.
As mentioned earlier, we've been denied CPP (government disability). We have paperwork from doctor's and specialist's stating that Anna is in chronic discomfort with restricted activity, severe exhaustion and overwhelming fatigue. Here are some of her doctor's words;
"Anna is motivated to do things and constantly tries to increase her activity & strength, but unfortunately her progress is fragmented and prone to many setbacks. I honestly do not know who would employ someone with Anna's health issues."
While it's certainly not a glowing review, it is the truth. The truth hurts sometimes.
Because Anna's conditions are rare, poorly understood and invisible, it is extremely hard to explain what is going on to the uninformed. It's not unusual to be met with bewildered looks from supposed professionals. Often it seems that Anna has become a fascinating science project for the various specialists.
Anna is currently in Calgary undergoing tests from Alberta's curious professional observers. From past experience I can tell them right now, "No, it's not Lupus." However, the one thing we've learned from Alberta is that their medical system appears to be a little quicker, and Calgary has an EDS specialist (even more rare than the syndrome itself).
The intricacies of Anna's situation, and the toll that it takes mentally can become quite challenging. I can not think of a stronger woman than her.
Together we've kept details of our life pretty close to home, with only immediate family and a few close friends in the know. Now that provincial travel has come into the picture, expenses have grown even more. As EDS presents risks while flying, Anna can not fly. Driving is wonderful, but it has me taking time off of work. Less work = less money = more problems. So here we are asking for your help; please and thank you.
Some of our continuing expenses:
- Strength Tape: $150 per roll. Approx. 1 month supply.
- Custom knee braces: $500-650 each.
- Swan neck finger splint: $92 each.
- Air Purifier: $200+ (high end air purifier: $1000+)
- Better vacuum: $400+
- Compression stockings: $150
- Organic 'low-histamine diet': $150+ per grocery store visit
Anna's EDS Support Group
Here is Anna's story:
In March of 2008, she was diagnosed with Thyroid Cancer. Because the cancer was very advanced, she went into major surgery within a few weeks. What was originally thought to be a 3 hour procedure wound up taking close to 6 hours. Upon completion, she had her thyroid and her parathyroid removed, as well as 29 other pieces of her neck that tested positive for metastatic papillary carcinoma (Cancer).
Although the surgery was deemed successful, the trauma that her body experienced awakened dormant genetic monsters. As rare syndromes and disorders, it took almost two years of testing with many different doctors and specialists in Victoria and Vancouver to start deciphering some of the puzzle.
For starters, she was diagnosed with EDS and POTS. Let me explain:
Ehlers-Danlos Syndrome (EDS):
- an inherited connective tissue disorder.
- EDS is caused by a defect in the structure, production, or processing of collagen or proteins.
- Collagen is an important contributor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs; abnormal collagen renders these structures more elastic. In some cases, the severity of the mutation can be life-threatening.
- EDS is a chronic pain disease, with patients suffering daily.
- The hypermobility type of EDS sometimes co-occurs with POTS. This type of EDS is characterized by loose, clicking joints prone to subluxations and dislocations.
- Because one can 'appear' healthy despite EDS, it is considered an invisible disability.
Postural Orthostatic Tachycardia Syndrome (POTS):
- a condition in which a change from the supine position to an upright position causes an abnormally increase the heart rate.
- symptoms include palpitations, light-headedness, chest discomfort, shortness of breath, weakness, blurred vision, fainting, migraine-like headaches.
- the causes of POTS are poorly understood.
The diagnosis of EDS and POTS seemed to answer a few of the questions, but some queries were left unresolved. As time passed, more issues presented themselves and the plot thickened. No one could explain the rashes and hives that her skin would periodically exhibited.
More medical tests were given, skin biopsies cut-out, and plenty of time spent waiting to see specialists from various fields ultimately get stumped. Eventually after what seemed like another year or two, an allergist/immunologist diagnosed her as having 'borderline' Mastocytosis.
Mastocytosis:
- a rare mast cell activation disorder.
- People affected by Mastocytosis are susceptible to itching, hives, and anaphylactic shock, caused by the release of histamine from mast cells.
- There is currently no cure for Mastocytosis.
- a 'low-histamine- diet helps treat the symptoms.
Due to the Mastocytosis Anna is on a 'low histamine diet', and is in need of air purifiers and allergy medication. These medications as well as her post-cancer surgery medications, and the 'low histamine diet' shopping list are quite costly.
Another concern with Anna having all of these 'things' is that she can not take the usual medications and pain-relievers. She is either allergic or negatively affected by their adverse side-affects. It's not uncommon for her to be in the hospital, only to have things made worse by an attending physician trying something new.
These incurable conditions leave her on her own trying to manage the pain and somehow find comfort. She has some braces for various parts of her body to help keep her joints in place. We currently own knee, ankle, wrist, shoulder and neck braces, as well as wedge pillows. The ankle, shoulder and neck braces were custom-made at quite a hefty cost. We're looking at having some knee and finger braces custom-made.
As mentioned earlier, we've been denied CPP (government disability). We have paperwork from doctor's and specialist's stating that Anna is in chronic discomfort with restricted activity, severe exhaustion and overwhelming fatigue. Here are some of her doctor's words;
"Anna is motivated to do things and constantly tries to increase her activity & strength, but unfortunately her progress is fragmented and prone to many setbacks. I honestly do not know who would employ someone with Anna's health issues."
While it's certainly not a glowing review, it is the truth. The truth hurts sometimes.
Because Anna's conditions are rare, poorly understood and invisible, it is extremely hard to explain what is going on to the uninformed. It's not unusual to be met with bewildered looks from supposed professionals. Often it seems that Anna has become a fascinating science project for the various specialists.
Anna is currently in Calgary undergoing tests from Alberta's curious professional observers. From past experience I can tell them right now, "No, it's not Lupus." However, the one thing we've learned from Alberta is that their medical system appears to be a little quicker, and Calgary has an EDS specialist (even more rare than the syndrome itself).
The intricacies of Anna's situation, and the toll that it takes mentally can become quite challenging. I can not think of a stronger woman than her.
Together we've kept details of our life pretty close to home, with only immediate family and a few close friends in the know. Now that provincial travel has come into the picture, expenses have grown even more. As EDS presents risks while flying, Anna can not fly. Driving is wonderful, but it has me taking time off of work. Less work = less money = more problems. So here we are asking for your help; please and thank you.
Some of our continuing expenses:
- Strength Tape: $150 per roll. Approx. 1 month supply.
- Custom knee braces: $500-650 each.
- Swan neck finger splint: $92 each.
- Air Purifier: $200+ (high end air purifier: $1000+)
- Better vacuum: $400+
- Compression stockings: $150
- Organic 'low-histamine diet': $150+ per grocery store visit
Anna's EDS Support Group